I had my 3 month checkup with Dr. Keith Schluterman, my neurologist in Conway, Arkansas on May 25th. Since my severe orthostatic hypotension is still uncontrolled on Mestinon and Midodrine, he told me he wanted to add Northera, or Droxidopa. Dr. Schluterman has been a Godsend to me so far. I have been battling fainting spells since I was 14 but didn’t get a diagnosis until age 27. He is the FIRST neurologist to put me on Midodrine! I wasted over 7 years with a different neurologist whose approach to dysautonomia was “We’re only putting a Band-Aid on something that cannot be healed, so what is the point?” She was the specialist, so I believed her.
After she dropped me as a patient because I suppose she was tired of putting Band-Aids on my progressing “Boo Boos,” I got another neurologist who only saw me as a rare specimen. She cared about the “Why I have Dysautonomia” more than “How can I make your life better.” When I didn’t want to go through expensive repetitive testing over and over for her research at my age, she told me not to come back until I was ready to do so. Excuse me if I didn’t want to be treated like a guinea pig. Then she left town not long after that happened. I’m in a small rural county in Arkansas. Specialists come and go. They don’t hang around long. If you have something strange and unusual, you are screwed. That neurologist did not offer me ONE dysautonomia medication or help at all.
So I get excited when a doctor actually WANTS to try medications I’ve only been able to read about in dysautonomia forums and on research websites like Mayo and Vanderbilt. Dr. Schluterman was up front with me about the costs. Northera is very expensive. Without insurance, Northera costs patients between $60,000-$80,000 a year. I do not understand why medications are so expensive. Having fought orthostatic hypotension for so long, I heard of Droxidopa years ago when it was only available overseas. So I know it took a lot of research and studies to get the drug FDA approved. My doctor filled out paperwork from Northera to get me approved for the drug. I left the office thinking even if my insurance approved this medication, there was NO way we could afford the copay!
I sent my daughter, mom, and brother a text to tell them about my doctor visit. I told them to pray. When my dad called me later in the day, I told him to pray.
Last Friday, my phone rang. It is from the Northera Pharmaceutical Company. They asked me a few questions about my insurance. They told me my copay would be $3,000! I told the representative there was no way my family could afford the copay. She then informed me of a program for which I qualified. I would receive a 30 day supply for free. After that, I would only have to pay $10 a month for my prescription. I was in complete shock.
I rarely sing a pharmaceutical company’s praises, but I am SO thankful for this program! I have some hope! I know I will never run a race. I will never jump on a trampoline or shop for 8 hours straight. I will never again ride roller coasters all day long in the hot Arkansas sunshine. I may never again feel the adrenaline coursing through my body as I jump from a high rocky cliff into one of our beautiful blue lakes.
However, I have hope Northera will give me some relief, a better quality of life. SOME improvement in my daily living is better than nothing. Since I have met Dr. Schluterman, he has done more for me than both of my other neurologists ever did. I’ve only seen him a few times so far. I hate that I wasted so many years with an uncaring doctor unwilling to treat me because I can’t be “healed.”
Just because we chronic patients cannot be healed does not mean we do not deserve treatment. I know doctors go into their profession to heal people. I went into teaching to teach. Sometimes I would get a severely disabled student in 6th grade that could never learn past the 2nd grade level. Did I throw that student out of my classroom? No. I taught that student on their level. Healing comes in different forms. I am being healed by a doctor giving me the treatment I deserved and had a right to all along.
Never give up hope.