Tuesday, September 30, 2014

Saturday, September 27, 2014

Others Harmed by Obamacare

 KI haven't taken screen shots of every person who has Tweeted about their Obamacare horror stories, and now I'm sorry I Haven't! I get messages, Tweets and emails several times a week where people tell me they are experiencing some of the same nightmares that my family is facing. I'm going to be better about it and add the public Tweet screen shots here. 

Not long after this Tweet, at the End ExIm Bank rally, a friend told me her glaucoma eye drops were now over $900 ! HOLY COW! Why aren't there more people outraged!? 

Sunday, September 21, 2014

The Left Never Does Their Due Diligence

I often don't know if I should laugh or cry over the ignorance of the left. They never do their due diligence on anything. That's how we got the ACA. They had to pass the bill to find out what's in it. 

Does anyone on the left realize that while ALL insurance plans are subject to the laws set forth in the ACA, not everyone is eligible for the plans on the exchanges? Not that we want them. I looked at the NC exchange through BCBS and the plans all cost more, cover less and none cover the boys' specialists out of state.

So, as of now, we are not eligible for any plan on the Obamacare exchanges. We have employer benefits and that disqualifies us. If the plans were actually more affordable than our current plan, we wouldn't be living in fear of being dumped to the exchanges. If these plans covered what our current plan covers and let us keep their current doctors, we wouldn't fear being dumped to the exchanges. 

When the left has no facts, all they can do is name call and attack. Sadly, they don't want to face the truth that kids like mine lose access to life-saving treatments if dumped to the Obamacare exchanges. People with Shwachman-Diamond don't do well if they have to go to bone marrow transplant at a regular transplant center. Survival is 50%. If they can go to a place like Cincinnati Children's or Seattle Children's, they have over a 90% chance of survival. If we are dumped to the exchanges, my children can no longer see their specialists out of state and can't go to transplant at these two places.

My opposing the ACA has nothing to do with disliking Obama. I dislike the law and I vehemently oppose his policies. His policies are responsible for destroying my family's finances. If Obama's namesake had actually saved our family the $2500 per year on insurance premiums he promised every Anerican family would save, I'd be singing the praises of the law. If it had decreased our costs instead of exponentially increasing them, I'd be admitting that. I have receipts/invoices on my blog for the world to see. The left ignores them or blames everything other than the law. 

Copays stayed the same for 6 years....the law passes and the copays skyrocket. Premiums, deductibles and out of pocket maxes that had only slightly increased in 6 years suddenly skyrocket after the law starts being implemented. But our increased costs have nothing to do with the law!? Right.  
Repeatedly calling me a liar doesn't make it true. :/ 

Thursday, September 18, 2014

The Left Came Out to Play

It has been a fun week Nicole did a great job on the OpEd she wrote on my family for the Daily Caller this week. There were quite a few people who were more than happy to comment that I wasn't telling the truth.

I thought the reverend was funny. He says he gives it three weeks before it's debunked by fact checkers (code for "she's lying"),  but later says he didn't say I was lying. So which is it? Am I lying and thus what Nicole wrote in the article will be debunked or am I telling the truth? We all know the reverend thinks I'm lying! LOL  

Of course, I'm a victim of the right wing media. That is their go to line. I could certainly never be telling the truth base on my own experience with Obamacare. No, I'm a shill for the right. 

You knew someone else would say I was a right wing shill. It's on the talking points sheet they get from the DNC. Lisa felt she had to repeat herself. I could only respond with "LOL". Lisa doesn't understand that Obamacare is insurance reform. ALL health insurance. The exchanges are just one part of the law. 

The government now regulates insurance, they all have to cover the same things and this means it's government controlled healthcare. If government dictates what is and is not covered through insurance, government controls healthcare. 

Later Lisa says I'm misinformed. It's pretty funny coming from someone who doesn't even realize that Obamacare was an insurance reform bill, that it regulates all insurance. 

I have documentation to back up my claims. Of course, it is the tactic of the left- without facts, they can only say we have none. Invoices, policy details, etc going back years before Obamacare and through the current year are hardly anecdotal evidence. 

And of course, there's always the token, "It's okay it's happening to your family, look how many people have been helped." She states it differently, but.. You know what she's saying.....Obamacare is so wonderful and great, it doesn't matter if your family is harmed, your children die or can't get their life-saving medications, because it helps so many others. It's just unfortunate, but it is for the greater good (communism). Don't you just feel the compassion of the left in these comments? 

End the Export-Import Bank Rally at Kay Hagan's Office

Yesterday, we brought letters to Kay Hagan's office asking her to let the Export-Import Bank expire. 

Talking to her staffer:

I love this lady's sign:

Rally outside her office:

Monday, September 15, 2014

Obamacare Leaves Family "Shocked and Horrified" by Medical Expenses | The Daily Sheeple

Obamacare Leaves Family "Shocked and Horrified" by Medical Expenses | The Daily Sheeple

Team Twitchy first picked it up, then Daily Caller and The Daily Sheeple.
I am so thankful for the various media outlets that picked up the story of our family! 

It's Official- Kids' Life-saving Meds No Longer Covered

Today's the day! Our boys' life-saving medications are officially no longer covered. 

Luckily, I got refills a week before coverage ended. Last week. I received the physical copy of the letter their doctor had previously emailed to me. The second letter. The first letter never reached the intended folks at the insurance company. Their physician faxed a letter again on September 4th. Pictures of the doctor's second letter, the letter stating we can't appeal until our plan changes (back), and pictures of what we will now have to pay instead of a $150 co-pay.

I've really enjoyed reading the comments on Twitchy and the Daily Caller. Some people are worried about the left attacking me or the IRS auditing us. The left thinks I'm lying, as usual. What can I say!? I post receipts/invoices, the letters, doctor's letter and still they think I'm lying. If what they see here doesn't convince them that I am telling the truth, I don't know what will.

I thought if I put everything here, with the exception of the 11 letters stating which meds were being dropped from coverage, folks might actually believe it. Well, rational beings. The 11 letters from insurance stating which meds are no longer covered can be found here. Sorry for links just being cut and pasted. Writing this as we head to second doctor appointment of the day! 


And here: 


Doctor's letter trying to appeal the meds no longer being covered:

Below is the letter stating we can't appeal until our plan changes ( again? Changes back? Because these meds have been covered for years):

We used to pay a total of $150 in prescription copays fir the compounded meds that are no longer covered. Now we will pay $653.58. One med is available from a pharmaceutical company which will cost us $33.33 each month ( total for both boys) plus the $513.50 and $106.75 monthly - I did mock orders to see how it would change costs for us. Keep in mind that we already pay $150-$200 each month for the other OTC portions of the mito cocktail already. This on top of all the other prescription copays that Obamacare has increased. 

Friday, September 12, 2014

Gianna's Cookbook!

A good friend's daughter has Spina Bifida and she just published her first cookbook! Please check it out here.

I think you'll like it!

End the Export-Import Bank Rally

This past Tuesday, we met with Representative Virginia Foxx's staff and asked them to tell her that we want Congress to let the Ex-Im Bank expire. 

We wrote letters to Rep. Foxx and then headed outside for a sign wave rally. 

Here are a few pictures from Tuesday:

Key Vote- VOTE NO on Amending the First Amendment

I never imagined a day where 49 senators would sponsor a bill to amend something in the Bill of Rights. If this doesn't wake people up to exactly how rabid the left is in this nation, I don't know what will. Urge your senator to vote NO. If your senator is a sponsor, also urge them to stop smoking crack.

From Freedomworks:

As one of our over 6.6 million FreedomWorks activists nationwide, I urge you to contact your senators and ask them to vote NO on S.J. Res. 19, a proposed Constitutional amendment that would enshrine into law the government’s ability to restrict political free speech. Sponsored by Senator Tom Udall (D-NM) and co-sponsored by 48 of his colleagues, this amendment would take the unprecedented step of amending Americans’ First Amendment rights.

Free and open political discourse is the lifeblood of a democratic form of government – so essential to freedom that the framers of our Constitution placed its protection as the very first limitation on government power enshrined in the Bill of Rights. This amendment, in the name of limiting corporations’ influence over politics, would in fact allow the government to regulate any expenditure that they deem to be intended to “influence an election”.

The only limitation placed on this sweeping power is that the amendment should not “be construed to grant Congress or the States the power to abridge the freedom of the press.” The very fact that this qualifier exists shows that the government would be allowed to restrict any other expression of a political opinion that costs money. This could include books, movies, and radio programs – not to mention the expressions of any tax-exempt organization (churches, think-tanks, even unions) that touch upon political issues.
Simply put, the federal government should never be allowed to restrict any non-violent expression of political opinion by any group or individual – and that includes when private funds are being used to disseminate that expression.

Therefore, we hope that you will call your senators and ask them to vote NO on the Udall Constitutional amendment to limit free speech. FreedomWorks will count this vote as a Key Vote when calculating its Economic Freedom Scorecard for 2014. This scorecard is used to determine eligibility for the FreedomFighter Award, which recognizes Members of Congress who consistently vote to support economic freedom.

Matt Kibbe President and CEO, FreedomWorks

#Obamacare Has Destroyed My Family | Pundit House

 Christian Hine from Pundit House did a nice write up on what's going on with my family. I'm blessed with so many excellent writers who want to share what's going on with our family. Pay attention, because this could happen to your family, too. Obamacare is an equal Opportunity destroyer. One illness and your family could be in the same boat as mine!

Obamacare Has Destroyed My Family | Pundit House

What Used to Cost us $150 Will Now Be Over $700 Thanks to #Obamacare

I'm not that great at coming up with subject titles for my blog posts. I should probably rename my blog "destroyed by Obamacare". That seems to sum up our lives at the moment. 

Monday, we received a letter stating we couldn't appeal the medications that are no longer covered. I was numb. It felt like someone punched me in the gut and took my breath away. Four days later, I am recovering from the blow. I still feel numb, we still have no idea how we will manage, but we are placing our trust in God. 

What does this termination of coverage mean for our family? Basically, it means all the meds we used to pay $150 in copays for each month will now cost us over $700 a month. Only one med I've not had the time to price and the total is $692.57 per month without it. If you look at the cheapest places to get the mito cocktail www.swansonvitamins.com , you'll see that buying enough ubiquinol so that each of my kids can get 1600mg per day each will cost us $257.63 for a one month supply.

The cheapest Idebenone I can find will cost us $106.75 for S each month. J doesn't take it. The D-Ribose at the high doses they take will cost $178.32 each month. On and on and on. While I was searching for the cheapest places and doing the math, I felt like I was going to vomit. 

The extra $550 each month will be on top of our average over 2k a month and these figures don't even include the increased premiums we are paying! Families with chronically ill kids NEED higher monthly medical bills, right? Funny that so many of my liberal friends kept telling me how wonderful Obamacare was going to be in 2015. They would point out that starting in 2015, medication copays are required to go toward your out of pocket max. To which I would reply, "That means companies will start covering fewer prescriptions before 2015." I'd also remind them, "We have to make it to 2015 first." I was right on the mark. I sure hope I'm wrong about thinking we will be without insurance next year. 

I'm not sure if I mentioned that we'd gone to Cincy last month to prepare for another surgery in October. We also found out my youngest will need extra testing and will need to see a neurosurgeon when we go back. J ended up getting a virus on his last day of 20 days worth of antibiotics for a bacterial infection. one week to the day, his brother developed a bacterial infection and is currently on antibiotics. Between all of this, ordering IGG and other medical supplies, I've spent hours and hours on the phone trying to figure out how we can get the medications covered. The nurses and doctors have also been working on it. Obamacare makes everything a nightmare. BEFORE the law... Everything was covered, the only medication we needed a preauthorization for was IGG, a blood product. Before the law, the doctor wrote scripts we paid for them and we had reasonable copays. 

We liked our plan, but we didn't get to keep our plan. Our plan changed in preparation for the the Obamacare regulations starting in 2015. Sighs. With so many things going on right now, the last thing we needed was for our plan to change and medications to be no longer covered. Thank you, Obama,  Pelosi and Reid....and all the RINOs who stood against Cruz and Lee last year on defunding Obamacare.

Thursday, September 11, 2014

My #Obamacare Interview with Nicole Revels

Nicole sat down with me last month- a week before our trip to Cincinnati Children's Hospital. This interview took place before we received notification that we could not appeal the life-saving medications that are no longer covered.

Life before Obamacare was a million times better. Please watch this interview. I'm just a mom. Not a professional... sharing our story.

Debunked: Ex-Im Bank Myths #EndExIm

Monday, September 8, 2014

Denied Because of #Obamacare

We liked our plan, but we can't keep our plan. For many years, all of our children's medications have been covered. Until Obamacare. That all changed after the law passed. For 6 years before the law, a name brand medication my son was on because he doesn't respond to the generic had a $131 copay for a 3 month supply. That all changed after the law. We worked on getting medical necessity approved, but had to pay $532 several times. We just got the yearly approval for that again today, thankfully...otherwise we'd of paid $708 this refill. Before Obamacare: No stress, no anxiety, just get the script and fill it. Now, we must go through this process forever..... it is a life-long med, which means we will have to do this yearly for as long as his is alive. Never knowing if one day it will be denied.

Today, I received a letter stating that all 20 of their mito cocktail meds were denied coverage without the ability to appeal. We liked our plan, but we can't keep it. These medications were covered for years and years before Obamacare passed. Now we are left without coverage...unless our plan changes back. To read the letter their doctor wrote, go to this link: http://catholicteapartyhippie.blogspot.com/2014/08/letter-from-mito-doctor.html  You'll see the doctor explains not having these meds can result in death. 

The faxes from the doctor were attached to this letter.

This is thanks to Barack Obama, Harry Reid, Nancy Pelosi, Kay Hagan and all the RINOs who stood against Ted Cruz and Mike Lee. Those RINOs are just as culpable in the destruction of my family. BECAUSE they failed to STAND UP. 

Saturday, September 6, 2014

Life After #Obamacare

Life for families of chronically ill kids in the post-Obamacare world is miserable. Aside from layoffs, doctors quitting or retiring, longer waits and decreased quality of care, many families are being bankrupted. Obamacare is causing employers, insurance companies and providers to cut costs in response to the exponentially increased costs imposed upon them because of Barack Obama's namesake law, Obamacare. These cost cuts most often affect the sick. While feminists are wailing that their $9 month birth control isn't "free", sick people are losing access to life-saving medications so that the companies can pay the extra millions required to give these women their "free" birth control.

I refuse to call it the "Affordable Care Act" because it simply is NOT affordable. Our family's insurance premiums have increased over $2,000/year when the president promised the law would decrease premiums by $2,500/yr. Our deductibles, copays and out of pocket max limits have all increased. If one million women now get "free" $9 birth control. That's $9 million a month, $108 million a year the insurance company now has to pay out that it didn't have to pay before. Where do you think the insurance company gets the money to pay for that!? Increased premiums, copays, deductibles and out of pocket maxes. It's simple math. What about the free sterilization surgeries? Exponetially more than "free" birth control.  

What's even worse than all of that? It's not bad enough that we have to deal with two chronically ill kids, upcoming surgeries and medical procedures, we are facing losing coverage for their life-saving, life-changing medications. I keep getting notices that we need to refill the $700 medication I keep harping on. Trouble is that we don't have $700 to pay for it and we are STILL waiting for the pre-auth. 

Prior to Obamacare, ONE medication required a pre-auth. Their blood product, IGG. Now we have a total of 22 meds that require a pre-auth. Only two of which we know for sure will actually be covered, meaning we win the battle. We assume we will get the pre-auth for the $700 med eventually. The first time it took 2 1/2 years to get it. The pre-auth lasts for a year. So we have to go through this every year and never know if it will go through or how long it will take. 

I'm sitting here after a day of trying to plan my yougest son's next surgery and trying once again to get the proper per auth paperwork sent from the doctor to the insurance company for the other 20 meds. Doctors are overwhelmed by all of this additional paperwork and letter writing. It cuts into the time they have to see and take care of patients. It takes an incredible amount of time and, since I can't just write my own letters to the insurance company, I have to constantly be on top of it asking, calling and getting people to resubmit the proper paperwork.

Imagine trying to take care of your family with sick kids AND worrying about no longer being able to afford the medications they need. That's my post-Obamacare life. Well, that and worrying about losing employer benefits and being dumped to the exchanges which would mean losing all of our children's Shwachman-Diamond  and Mito specialists......and losing access to life saving treatments. Literally losing access to life saving treatments.

SDS kids who go to regular transplant centers have a 50% chance of survival. If they go to Cincy or Seattle, it goes above 90%. If dumped to the exchanges, we lose access to the latter. They aren't included in the networks offered. Even the $1700 a month plan- 

Obamacare is a nightmare. Obama's entire presidency is a nightmare. 

$6,376.57 Just in Med Copays Thanks to #Obamacare

S top, J bottom. Insurance has paid $263,070.88 for meds in 2014 already. We've paid $6,376.57 in copays ($5,876.57 shown here and $500 for meds not covered, not including the OTC portions of the mito cocktail we buy) The numbers are mind blowing. Life before that crap law known as Obamacare was much better.