A Catholic Life

Thursday, September 4, 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.

Friday, August 22, 2014

Letter From the Boys' Doctor

Here is an excerpt from a letter of medical necessity the boys' mito doctor wrote to insurance. We pray that this means they will decide to cover the medication (for a year...because these Obamacare changes mean we have to do these things yearly, always worried coverage will end...of course, if we have insurance at all next year).

The doctor emailed me the letter he sent to insurance. I wish he hadn't. Don't want to believe any of this is true. I hate reality. The one sentence is kind of choppy.... "result in death as seen in..." The doctor is crystal clear about what will happen if the meds are no longer covered.

August 15, 2014

Re: XXXX Curran (dob: XXX)

To Whom It May Concern:

I am writing on behalf of my patient XXXXX who I diagnosed with Mitochondrial Disease (ICD9: 277.87).

He experiences muscle weakness and fatigue which affect his ability to engage in daily activities. He has deficient cellular energy production which causes neurological deficits, muscle pain and fatigue. He has difficulty swallowing and frequently chokes and microaspirates.

Management of XXXX's disorder significantly depends on these [compounded medications] which have been shown in many studies to be helpful in improved muscle strength, increased energy levels, and slowing the progression of this disease (refs 1-3). He has been on the compounds that I've prescribed which resulted in a significant improvement in his swallowing, energy and strength as well as activities of daily living.

As his primary Mitochondrial Disease specialist, it is my opinion that without this [compound] XXXX's muscle and organ functioning would decline significantly resulting in the life-threatening progression of his disease (well known part of natural course mitochondial disease) and subsequent extended hospital stays.

If insurance coverage for the [compounded medications] is denied, XXXX may develop neurodegenerative symptoms which can result in death as seen in mitochondrial disease.

I would be glad to answer any questions and communicate further. I would also provide lab reports, clinic notes and scientific literature substantiating my assessment and recommendations.

References:

1. Parikh S, Saneto R, Faulk MJ, Anselm I, Cohen BH, Haas R, Medicine Society TM. A modern approach to the treatment of mitochondrial disease. Curr Treat Options Neurol. 3009 Nov; 11(6):414-30.

2. Dimauro S, Rustin P. Biochim Biophys Acta. A critical approach to the therapy of mitochondrial respiratory chain and oxidative phosphorylation diseases, 2009 Dec; 1792(12): 1159-67.

3. Tarnopolsky MA. The mitochondrial cocktail: rationale for combined nutraceutical therapy in mitochondrial cytopathies. Adv Drug Deliv Rev. 2008 Oct-Nov;60(13-14): 1561-7.