Those of you who know me know I like to lift people up, not complain on social media, and offer solutions. These last 6 months, maybe 8, have been extremely trying, heart-breaking, and cruel. This is a very difficult post to write but thankfully, it does have a little bit of a not so depressing ending.
Many of you know we have had to switch gears after Becca’s carpal tunnel surgery repair that never fully removed the pain while massaging. She was denied for disability stating that she hadn’t been a massage therapist long enough at her age. She was supposed to suffer through the pain one more year. It was a massive hit to our finances so we regrouped. God connected us with a landowner in Georgetown and we have been able to slowly expand our cattle herd which should reap huge rewards down the road. Becca would manage the day to day on our farm and I would continue working full time off of our farm.
We first noticed something was off when she would sweat and break out in hives. Then that seemed to go away. Then maybe around May the tingling in her left arm started morphing into numbness and eventually discoordination to the point where she would trip and fall just walking or falling up our steps. She was seen in August by her primary care doctor for what was coincidentally her annual checkup. Her Dr asked why she had waited so long. It took two months just to get a normal appointment with her Dr. The Dr said based on her symptoms Becca had either Multiple Sclerosis or a brain tumor with a 95% certainty it was scenario A.
She had some imaging done and was confirmed to have multiple nerves with scar tissue in her brain confirming the MS diagnosis. She was scheduled to see a resident at the UC Gardner Center for Neuroscience October 24th. This was at the end of August. I informed my boss at work of her situation and within an hour, I was talking to renowned Neurosurgeon Dr. John Tew. I informed Dr Tew of our situation and all her symptoms. The very next morning Becca got a call from the head of MS department at UC, Dr Zebeti said he opened up a time slot that Tuesday September 9th; a month and a half ahead of her already scheduled appointment.
The team at UC has been incredible. It is no wonder people come from all over the world to seek care at this facility. With over 30 years of experience, it was very apparent to Dr Zebeti Becca had MS and certainly had had it for some time. Her symptoms, despite only just having been diagnosed were further along than most. He ordered the long time proven, reliable and most effective MS drug, Tysabri. Our copay, after we met our $6000 deductible would be $1000 a month until we reached our max out of pocket. Our Insurance, Anthem, denied it. The medical team appealed the denial. We waited 30 days. Again denied. Becca was sent home from her next appointment with a financial aid packet to help with the cost of the next MS treatment drug they prescribed: Ocrevus. Insurance denied Okravis. My anger begins to boil to the point of no water being left in the pot. My wife who has given me everything is declining before my eyes. Our lives had become so insanely difficult as I do everything I can do finish coaching softball and organizing that whole fall league. Shout out to Justin for really stepping up and doing 90% of the work! I did everything I could to do the labor on our farm including the rental farm and still attend any of the kids functions. I have become a walking vegetable at work.
I try to get involved in any way I can to help this process along. The neuro pharmacist at the Gardner Center has been incredible. He is extremely knowledgeable about all medications related to neurology and the process most insurance companies use to approve and deny treatments. He has been in regular contact with Becca. We learn that Anthem wants to only approve a lesser efficacy (weaker) drug first for a period of 6 to 8 months or more to establish baseline and then reevaluate her to see if she has more scarring in her brain or not. The Drs by this point are certain Becca has been living with MS untreated for at least 18 months to 2 years. The were guaranteeing a weaker drug would lead to more brain damage. Meanwhile, Becca is waiting on a medication, still feeling terrible most days. I would say 1 in ten days is a good day.
I coldly begin calculating all the things I could do to pay for her medication outright. Only fans? Yeah, no. Unless people just want to pay me to listen to them vent but I am sure that requires a license. Another off the farm job? Nope. I already have negative time and I would be home even less to help with house stuff and meals. Oh yeah, hey, I am worth more dead than alive. If I could fake a homicide and off myself, they could use the life insurance money to pay cash for her treatments and use the rest to live on. Too dark? Tell that to Anthem. It got to a point where I felt like because I refused to die, my wife would continue to have more and more permanent brain damage. And obviously, that is a false dichotomy. Because of corporate greed on behalf of Anthem, my wife continues to decline.
I started trying to come up with a plan using systems in place. Do I contact the local news channels? Do I contact the state attorney general and see about a case to prove intent to harm? Medical professionals are in the business of treating the sick and caring for the wounded. Health insurance is in the business of extracting money from that transaction. Do you know before Obamacare, we didn’t have insurance for the kids. We would pay cash. The cash price for a sick visit is half the price. They increase the price because of the cost of doing business with insurance companies and knowing insurance companies will only approve a lesser amount. The whole system is soooo screwed up.
Now we can all acknowledge there are wonderful people working in health insurance. We can all act like because we know a good person in health insurance therefore we shouldn’t change anything. This country was founded because we were pissed about a 2% tax on goods from England. What about a 20 to 25% “tax” to be be able to be seen by not the doctor of your choosing and then another 20% tax or more to get the treatment you want? Our founding fathers would be rolling over in their graves.
I know times are tough for everyone. That being said, it really really pisses me off when the only thing people talk about making cheaper is your grocery bill. Are you serious? How about health insurance? How about car insurance? Homeowners insurance? Cell phone bills? Internet? College? End of rant.
It is around this time that the CEO of United Health Care is gunned down in broad daylight. I will never ever cheer for someone getting murdered. The guys shooting at us when we were deployed to Iraq? I have no ill will towards them. I think killing the CEO was senseless and pointless. It literally created a martyr. The conspiracy theorist in me also thinks something else was afoot.
All this is going on while we are having holiday parties and the boys bowling matches and Emily’s choir. Becca continues to not feel well. The exhaustion, the brain fog and memory loss, the discoordination not getting any better. Then out of the blue… Becca gets a phone call from Genetech, the makers of Ocrevus. They informed her she had just been denied a second time for Ocrevus by Anthem. Based on the financial aid application she had filled out, Genetech approved her to get Ocrevus for one year for free and could reapply at the end of the first year! We think there will still be some expense for administering the infusion but holy cow what a turn around! This was the hand of God hearing our prayers and all who have been praying for us.
So in summary, we have been paying monthly a very fair rate of $670 for her to have permission to drive an hour to see a primary care doctor that is covered. She sees the primary care Dr once per year. So in effect, it has been costing us $8,020 a year for her to see her primary care dr. And for those of you who say “well insurance is really for the more catastrophic injuries and illnesses,” I would tend to agree with you if they actually approved what she needed. In the end, a pharmaceutical company, a business category I have often accused of corporate greed, is the one who steps in to save the day when insurance needs my wife to have more permanent brain damage.
The way forward: Becca will get her first half of her first infusion January 8th. We hope it will improve her symptoms. There is no cure for MS. We must keep our personal farm going. Now that we have established a good breeding herd to produce our own meat animals, we should start making good money so that one day, we may be able to afford her medicine. Having said that, she is still going to have some tough days and possibly be unable to do farm chores. You may see us post about a farm work day or ten in the near future. We would be extremely grateful if you could donate some time to help us streamline more of our farming operation. Financially, money is going to be an awful situation for the near future. Everyone is struggling. We are not asking for money. We will do what we can to advertise in advance when our farm store is open. I will do what I can to continue posting education videos and pictures and maybe even finally kick off the educational classes this Winter. We are also going to hire a disability attorney to fight for her to get disability and then maybe we wouldn’t have to biggerize our farm.
If anyone has any questions, or concerns; let us know. We are an open book. We have suffered several other tragedies and this latest one really was the worse gut punch. To those who have been supporting us during these unfathomably difficult times, thank you so much. It means a lot. I didn’t get permission from any of you to mention you by name but thank you from the bottom of our hearts.
And now you know… the rest of the story.
Danny
Semper Grazing Ranch Gone Wild 