Wednesday, March 12, 2025Tonight's picture was taken in March of 2009. That afternoon we took Mattie to the circus. Mattie's art therapist helped us secure boxed seats, which was perfect, so that Mattie could be away from germs associated with crowds. We purchased all sorts of things for Mattie, including this elephant that lit up and twirled and a light up sword. Mattie truly enjoyed the excitement of the circus and I loved watching Mattie having this special experience. It was an afternoon I will never forget.
Quote of the day: Sometimes success is simply being willing to give it your all. ~ Amanda Beard
As a recap, for three years now, I have been taken Prolia. Prolia is a bone density drug. It is administered through an injection, twice a year. I was put on Prolia because I have osteoporosis in my neck and hips. Prolia is a monoclonal antibody medication used to treat osteoporosis and bone loss. It works by inhibiting the activity of osteoclasts, cells responsible for breaking down bone tissue. The reason I was placed on Prolia, was because I had a very negative response to oral medication, Fosamax. In fact, my response to Fosamax is considered rare.
Fosamax is taken weekly. I took it twice and each time, I landed up with an 102 fever, flu like symptoms, chest pain, nausea, an intense headache, and had to take to bed for four day. So literally it took four days to recover and then on day 7 I would take the next dosage. Therefore, on that drug, I spent more days sick, then I was able to function. This could NEVER work being a caregiver, and certainly it left me with no quality of life. Which is why out of medical necessity, I was prescribed Prolia.
I have been very fortunate, as I have had no negative side effects from Prolia, and my bone scans show that I am responding positively to the drug. However, each year that I try to fill the prescription, I am juggling one problem or other. Some of you may recall last March, my $1,500 co-pay for Prolia landed up going to the wrong place, and I spent three months fighting to get that money back.
So today, I went to my endocrinologist's office for my annual exam. The office said they would contact my health insurer and advocate for me to get Prolia. Later this afternoon, I got a call from my doctor's nurse, who let me know that they tried consulting with my health insurer and they will not allow me to get Prolia. I viewed that as an odd decision, since the insurer has been paying for it for three years already.
The nurse proceeded to tell me that the doctor is instead going to prescribe me a biologic, that I have to inject into myself daily. Can you imagine how I responded to that? SERIOUSLY!!! Why she was talking to me about this drug, I quickly looked it up. Want to know the safety disclaimer on the drug's website?
It says...............................................................
XYZ (not the real name of the drug) may cause serious side effects including: Possible bone cancer (osteosarcoma). During animal drug testing, XYZ caused some rats to develop a bone cancer called osteosarcoma. It is not known if people who take XYZ will have a higher chance of getting osteosarcoma.
Osteosarcoma of all things? My life has been permanently impacted by that nightmare, so there is no way I am going to potentially set myself up for a second experience with this horrible disease. I was so incensed with what I was reading that I told the nurse, that if they can't advocate for Prolia, I will STOP taking bone density medications altogether. She said they tried advocating with my health insurer TODAY but were denied!
Any case I told the nurse I would think about this daily injectable and get back to her. I let that sit for about ten minutes. At which point, I said, NOPE, I am going to contact my health insurer directly. I also went to my health insurer portal and read the letter as to why I was denied Prolia. Unlike what the doctor office is telling me, my health insurer is NOT denying the drug IF my doctor's office answers some questions. If the doctor supplied the answers, I would qualify for the drug. I read the questions, and I meet all the criteria. WELL of course I do, as my health insurer has been paying for this drug over the last three years.
I was on the phone with my health insurer for an hour. They were even nice enough to call my doctor's office, while putting me on hold. But of course it was after 5pm, and no one picked up the phone at the doctor's office. My health insurer told me that my doctor's office did NOT contact them today and there is NO record of an appeal from the doctor's office. So what this told me was that my doctor's office blatantly lied to me. There are two things I have a LOW TOLERANCE level for: (1) is being lied to, and (2) laziness. My doctor's office is administratively laziness. This isn't my first experience with their incompetence. They just don't want to go through the extra effort to fill out paperwork on my behalf!
Needless to say, after the hour long call with my health insurer, I sent two nasty grams to my doctor's office. I would write the appeal letter myself, but the health insurer says it MUST come from my doctor. What if I wasn't assertive or aggressive? What does the average patient do? I know exactly what most patients would do.... they would either not get the drug, or be signed up for a drug that is easier for the doctor to obtain, but may not be in the patient's best interest. To me this behavior is unethical and I am hoping to get my case documented with my health insurer, and then I will be changing doctors. As I need doctors on my side, who are looking out for my best interest. I can't wait for the nurse's response tomorrow. The system is not on the side of the patient and I truly wonder what has happened to this doctor and her clinical staff, that they have forgotten why they chose to work in the field of medicine.