Then Set Aside Your Anger & Get to Work.
In a place called, Wisconsin...
I was “awarded” a rating of 100% service connected disability. See, I was “lucky” enough to have symptoms of scleroderma while on active duty in The Navy.
Early in my diagnosis back in 1994, and through the years despite my times of inappropriate coping, I received the best possible care. I broke the “rules” to get it. In 2007, I was diagnosed with sarcoidosis after 14 years of symptoms that were confused with scleroderma symptoms, thanks to my persistence and the listening ears of my rheumatologist and pulmonologist at UCLA medical center. We owned a business at the time, and I was in charge of insurance benefits. Of course, we had the best insurance money could buy for our employees (before we went out of business) and I used that insurance to see specialists recommended by my rheumtologist at the VA Hospital, who had no idea how to proceed with my treatment.
One lucky day, my rheumatologist asked, “Do yo have insurance?” and he referred me to colleague he now collaborates with to keep me alive and active. Of course, it took some time. I met the specialist at UCLA in 2005 and got my sarcoidosis diagnosis in 2007 after frequent shleps from Murrieta to Los Angeles. Once I got the biopsy that showed I had sarcoidosis, my rheumatologist prescribed Remicade infusions in addition to Methotrexate. Long story short, after some time, the lymph nodes in my chest shrank, and it became easier to breathe.
Now, I enjoy Remicade every eight weeks at the VA Hospital. And here’s where I broke the rules: For my diagnosis, Remicade is number three in medication formulary. If I had received my first treatment at the VA I would have had to fail Humira and one more IV drug before being given Remicade. My rheumatologist at UCLA knew from my medical history and his experience with autoimmune diseases that Remicade was best for me. So, how did I slip that by the paper pushers? Golden Insurance.
My first infusion did need approval, because like the VA, other drugs were less expensive and Remicade was not the first choice of health insurance administrators.
Now, don’t go vilifying insurance administrators. Like many Americans, they are probably overworked and underpaid. And remember they have health insurance in their title. Their job is to work on behalf of a for-profit company. Sure, an insurance company might give them cute names, like “customer care representatives”, throw words like “advocate” in their job title; but they are paid by the insurance company. They are human and have responsibilities, they are not “the bad guy”. They just need information. And because like me, you or someone you know might have one or two chronic illness diagnoses that no one’s ever heard of and there is a lot of new information out there. Of course there are crappy doctors, but you will find many doctors who are willing to help you advocate for yourself. To get what you need, it’s just a matter of getting the right information to those who write the checks.
If – no, WHEN you find a doctor out there who will talk about non-formulary drugs that might work for you, or if you ask they will offer the name of non-formulary drugs to advocate getting, you need to get to advocatin’. You may need to make sure the insurance company gets the information from the doctor to the insurance company . This means opening up lines of communication between insurance administrators or “customer care representatives”. (Really, all they are is an agent of the “guy” with the gold. Remember, he who has the gold, makes the rules…) This means yelling and screaming exactly what you think of them is not the right course of action. Don’t panic if you have already done this. You just yelled at someone, so apologize and try to reopen communication. I speak from experience on this one. I have yelled at my share of “guys” who know THE guy. And an apology is a nice way to open the door to communicate and get this person exactly what they need to get The Guy to part with his gold on your behalf.
You know what sucks the most about all of what I just said? After all that work, most patients still don’t get what they need because of high copays. I’ll get to that later. See, I have the luxury of universal healthcare from the Veteran’s Administration. It’s no picnic, but I have no copays and they can never deny me care,ever for any reason, until I’m dead. Which has turned out to be a lot longer than they thought…
Yes, I know you have paid The Guy, but The Guy made some pretty tricky rules to make it so there is “gold”. Look, its easy to get mad at the system. But anger is time you are wasting when you could be making phone calls or faxing documents. Yes, it sucks. But don’t hate the playa, hate the game, then set your hate aside and get to work. Your life depends on it.
So, how did I manage to get non-formulary treatment? My doctor submitted the documentation needed to show the insurance company that the best course of treatment was Remicade. So, I got my first few infusions using my Golden Insurance. Then, our company went under. I disagree with my ex-husband it was The Golden Insurance that did us in. It was, after all 2008 and everyone was going out of business. So, we lost our insurance and I headed back to VA healthcare.
Back at the VA, my doctors there were working with my rheumatologist and other specialists at UCLA: Also known as: Continuity of Care. I was being treated with Remicade, but that was third in line in the formulary. How did we squeak this one by? Funny you should ask…
See if a patient is doing well on a medication, it is unethical to change the course of treatment. Now, not every doctor honors this. Again, don’t hate the playa, hate the game; then set aside your anger and get to work. If your doctor tries to switch you, it’s going to be a fight. Get used to it. I know it sucks. Life is unfair, but we do what we have to. Don’t worry, you’ll make “don’t hate the playa” your mantra soon enough.
So back to our story… So, my rheumatologist at the VA saw how well I was doing on Remicade plus Viagara (The same fight happened with Viagra as well). It took some time. I got approval for the Remciade first, then eventually, Viagra was approved. I kicked open the door for Viagra at my local VA Hospital for women. It’s considered a recreational drug for men. And I did have to bring my medical records to my doctors at the VA from UCLA. I still do. What a nice happy ending, right?
You know what I hate most about my happy ending? That patients who could benefit from the same meds I get, cannot get them because they have to deal with copays. See, when I had The Golden Insurance, I could afford copays and when the business tanked, bankruptcy took care of the loose ends. But as a 100% service connected veteran, my care and medication is covered 100% for everything. EVERYTHING. I pay no copays. So I have access to Viagra and Remicade and Nexium . Also non-formulary. Yeah, like I said; kickin’ down doors.
Now, you may be thinking, but a copay is a fraction of the cost, right? Right. But in 2009, Viagra was $6.00 per pill. And one Remicade infusion cost… It’s going to be legen-wait for it… $22,000.00 per infusion..dary.
Now, imagine yourself with no VA Healthcare or Golden Insurance. Maybe you have a kid or two and recently find yourself collecting an “entitlement” check of $1037.00 per month, plus $537.00 per kid. Living on such a “lavish salary” does’t leave much room for rent, food, clothing, school supplies for the kids and maybe there;s a birthday coming up for one of your little ones. Do you see where I am going with this? How many chronic ill and disabled parents have foregone their own medication to feed and house their own children? (This is the part where I get sick.)
In 1996, I went into a patient advocate’s office and asked if my benefits were some kind of mistake. See, I was given a pension and healthcare. I didn’t feel that sick.
The advocate told me that I was entitled to these benefits. That I had served my country and earned them. She told me my that my prognosis was not good and I would need them. I walked out of her office feeling not-so-entitled, but understood that I could not work and earn enough money to pay insurance to keep health benefits. I had no idea that people who were not veterans, got a whole lot less and did not have 100% health coverage. Yes, I even have dental.
So, I’m not sure where to go from here, but I’m starting something. I am in some kind of remission-esque stable condition. Scleroderma and sarcoidosis are both progressive diseases and the meds are only slowing it down. But, I’m feeling good. I;m no longer a hot mess with a blog. I’m an active patient who’s going to go out and show the world that treatment of symptoms with the right meds does work. That it’s not a waste of money to do research and make sure patients have access to care and treatment.
And so it begins, a fact finding mission. Healthcare for all: The Final Frontier.
Did you see how I started off all Star Wars then finished with Star Trek? I know you felt that Jedi Mind Meld.
Other people have tried it. There are programs set to go in place in 2014. But there are people who can’t wait that long. And starting another non-profit seems nuts when there are so many that need funding. So, I’m going to go out in the world and figure this out. I’m feeling good. I’ll have my bad days. More than anything, scleroderma and sarcoidosis have taught me that I am mortal. I plan to live a long time, but I have very little say in how long that really is. I could mistake rat poison for Skinny & Sweet. Because, “It looks like Skinny & Sweet… except for the scull and crossbones.” I couldn’t find a clip from the movie 9 to 5 for the younglings So here is Honeybadger narrating the hummingbird. Holy shit! They’re fast…