This is a letter that I wrote to my representative addressing issues with our state’s Medicaid office. I will post an update when I receive a response.
Rep. Greg Pence,
My name is Sunshine Ammerman. Before I begin this letter, I want to take a moment to thank you for your help in ensuring my disability case was dealt with properly and in a timely manner. I really appreciate the effort you and your staff made to assist me with that.
I am writing to you now because I have experienced some distressing hardships due to the Indiana Medicaid office’s poor handling of my healthcare needs. After I won my disability case, my insurance coverage was changed from the Healthy Indiana Plan to Traditional Medicaid. The transition was smooth and I did not experience a lapse in basic coverage, which was appreciated, but I did experience an issue with the continuance of one of my more important medications.
Without going too much into detail about the complexities of my condition, you should know that my diagnosis of Panhypopituitarism means that I have to take a number of hormone replacement medications in order to keep my body functioning. Without many of these, I will die, and many others that I take help me function day to day, managing energy levels, maintaining muscle strength, as well as the health of my internal organs. One of the medications that I take to improve daily quality of life and long-term health of my body is Growth Hormone. I have been on growth hormone replacement therapy for the last four years (more or less), and it has proven to greatly improve my ability to have a semi-normal life. If you are curious about all that growth hormone does for the human body and how important it is to replace this hormone when deficient, I encourage you to look into the medical research yourself. For the sake of brevity, I will not go into details here.
When I transitioned to Traditional Medicaid, their office informed me that they would no longer cover the growth hormone medication I had been taking. They told my doctor’s office that I would have to take their preferred brand instead. I did not mind that at all and agreed to change brands. The medicaid office responded again saying that my doctor would have to file a prior authorization (PA) form to prove that I really needed the medicine, despite the fact that I have been taking it for so long and had ample records under the Healthy Indiana Plan to prove this. I didn’t argue, we just got to work filing that paperwork and sent it in as instructed. I informed them that I was almost out of medication and I was told the PA was listed as “urgent” so it should be processed quickly, but I should still allow 72 hours for processing. Without going too much into detail about my hours of phone tag, waiting on hold, being asked to wait more and more days for the paperwork to process after it was denied over and over again, in the end it took a month to finally get it approved.
I was out of my medication for an entire month. Having been on this medication for so many years without interruption, my body did not take the change well at all. For the first week of missing my doses, I experienced withdrawal-like symptoms. I was extremely weak. I had shaking chills, intense weakness that made me feel extremely frail, periods of exhaustion despite doing nothing strenuous, and periods of insomnia where I could not sleep even when I needed to. Because my body was going through this stress, my other conditions caused by my panhypopituitarism were exacerbated as well, namely my Secondary Adrenal Insufficiency, which I encourage you to research as well so that you can understand how serious this kind of stress can be for someone with this condition. When it started to affect my ability to function day by day, I called the medicaid office and insisted that they take note of my physical condition so that they understood how important it is to get that medication approved as quickly as possible. This record should still be noted in my file.
I was bedridden for the first couple of weeks. As I write this letter, I am still without my medication. The prescription was filled and set to me, but an error on my doctor’s end resulted in me receiving a kind of injection I am not familiar with, so I have to wait for them to arrange for an injection training nurse to teach me how to administer it. I am still very weak. I am unable to do much at all throughout my day. Chores have fallen far behind as I am unable to perform even basic housekeeping tasks most days.
I have a garden in the backyard. Before I ran out of medication, I was very proud of my healthy zucchini plants, pumpkins, beets, and cucumbers. I was excited to harvest my produce and make it available for sale at our town’s small farmers’ market. Now, my garden is barely alive and I suspect it won’t last much longer because I have not had the strength in my body to water the plants or pull the weeds. It breaks my heart to look out the window and see it withering away and being overgrown by weeds I couldn’t pull.
Before I ran out of medication, I was learning how to play the mandolin. It was one of the first things I did for myself when I won my disability case. I had been dreaming of buying one of the mandolins on display at a local music store so that I could see if I had any unexplored musical talent. To my absolute delight, I picked it up quickly, and was just about to learn my first complete song when I lost access to my growth hormone medication. Now, I don’t have the strength and muscular control in my arms sufficient enough to strum to any sort of rhythm. My mandolin has been sitting in its case untouched and I have forgotten the chords already. I can not stress how frustrating it is to not be able to do something as simple as practicing an instrument for pure enjoyment.
Before I ran out of medication, I was trying very hard to improve my health. I started seeing a nutritionist specialist and found ways that I could stay physically active within my disability’s limitations. I want to be the healthiest I possibly can be despite my body’s naturally poor stamina. I got myself a treadmill, some dumbbells, a resistance band, and an exercise ball. My nutritionist had me logging everything I ate and was teaching me how to manage a healthy diet and exercise regimen. Since I lost access to my growth hormone, I have not had the strength to do even basic exercise. What energy I do have is always put into doing what NEEDS to be done around the house, and some days I can’t even do those basic things. I haven’t had the energy to prepare my own meals, so I have been eating poorly. I have also lost my appetite, so I often forget to eat and skip meals on accident simply because I don’t feel hungry when I should. I have lost four lbs in just a few weeks without doing anything. While I certainly appreciate the weight loss, this is not healthy.
I am disabled even with the energy and vitality granted by the growth hormone injections. Without it, I can barely care for myself let alone enjoy my hobbies. Because of my limited energy, I have not been able to get out of the house much or visit friends. I have been isolated. Tired. Feeling hopeless and defeated having to fight the medicaid office to get a medication that I frankly hate having to take in the first place (needles are no fun) but need in order to function. I feel like I have been living a marginal existence, and for no reason other than greed and bureaucratic nonsense.
I don’t know if you can do anything to help, but I needed to tell someone in government about what I have gone through. The medicaid office’s shortcomings have directly impacted my ability to function day to day. This should never be allowed to happen to anyone else.
Can you do anything to ensure that hoosiers on Medicaid aren’t suddenly denied medications like this? Nobody should have to worry that they will suddenly lose access to crucial medications they have been taking for years, especially medications that have detrimental effects on the body when the patient has to suddenly stop taking it, like in my case.
I am grateful for my health coverage and relieved that my fight to have my growth hormone covered is finally over, but I know there are many other hoosiers in similar situations still fighting for their medications. I’m sure there are many who have simply given up because the fight is too stressful. Maybe I’m being cynical, but I genuinely feel as though the PA process is so long and stressful because the insurers are hoping we will give up so that they don’t have to pay for those costly medications. Growth hormone isn’t cheap. They have real monetary incentive to deny this medication. It’s shameful. Nobody should have to fight so hard to get medicine that allows them to function.
I’m too stubborn to let this go unchecked. If you can’t do anything to help ensure the medicaid office processes PAs within in a reasonable time frame, keeping patient health a top priority, I would appreciate it if you would at least point me in the direction of someone who can.
Again, I appreciate all the hard work you have been doing for the citizens in your district. I sincerely hope you will be able to do something about this, even if it is as simple as sharing this letter with someone who can make the changes necessary to prevent this from happening in the future. I do not like having to complain or share the truly pitiful situation I have been put in, because I do NOT want pity, but I feel as though action will not be taken without stories like mine being shared in all its uncomfortable truth.
Thank you for your time and consideration. Please feel free to contact me if you would like to discuss this further. I would love to talk with you about this if you can find the time.
[contact info redacted]
Also included in the envelope:
Attached here is a record of my sleep logs recorded by my FitBit smart watch. While I know the records are not perfectly accurate as this technology is certainly not flawless, you can still use it to track changes in sleep patterns. I decided to share this with you in hopes that it would help illustrate how much this bureaucratic stalling has truly impacted many facets of my well-being. This is not for lack of trying to sleep well. Those few nights where I did manage to get more than 6 hours of sleep are likely nights where I had taken over-the-counter sleep aids to ensure I got some much needed rest. There are risks to taking those medications too often, so I have to be careful about when I do choose to use them.
These records are in order from most recent date, to the past, ending right around the time when I lost access to my growth hormone medication. This week actually hasn’t been terrible, which is probably why I have the energy to compose this letter today.
Thank you again for your time and consideration.