I’m a “Dadvocate” with a rare disease
Congressional District: ID01
Bone / Muscle Disease, Genetic Disease, Mental Health, Rare Disease
Issues and Challenges
Adam has encountered: Copay Issues, Insurance Issues
Two years ago, I was seemingly healthy, working in the field of education, loving life, trying to make a difference for students throughout the country. Then I started experiencing odd symptoms. Like any good 35 year old, I didn’t have time for that, so I pushed through. That is until I couldn’t anymore.
My diagnostic odyssey took almost a year to arrive at a diagnosis. It felt like forever, but in reality, many others go way longer before they get any answers. I thought a diagnosis would mean I’d get a treatment plan, be cured, & get back to life as I knew it. Instead, I found that I have a progressive form of mitochondrial disease called mitochondrial myopathy. My life and lifestyle have been drastically altered. It was the loneliest road I’ve ever been down.
As I’ve come to learn, I’m certainly not alone. There are over 7,000 rare diseases, and 93-95% of them don’t have an FDA approved treatment. The science just isn’t there...yet. And "yet" is a keyword. I believe we will get there, for my disease and others. Maybe not today. Maybe not in my lifetime. But we will get there. A year ago, advocacy wasn’t on my radar, but it is now, and I certainly want to help move the needle. I don’t have near as much strength as I used to, however, I’ll use what I have to push as hard as I can, when I can. That includes bringing certain access to care issues that I’ve discovered through this arduous journey.
While there is no treatment or cure for my disease, there are supplements that I take to help manage my symptoms. Under my old insurance, through my former employer, I was able to get one of the four daily parts of my mitochondrial cocktail covered. It was a reasonable copay and helped defray the costs of the other three necessities which were not covered. The first time I pulled up to the pharmacy to get my refill with my new insurance, I was shocked to hear that the cost had quadrupled. I asked the pharmacist to check again and was told that with my new coverage, this prescription would no longer be covered. I left without my refill, shocked and upset once again. I already have this feeling of guilt for all of the expenses my family incurs because of my condition. Now every supplement I need is strictly out of pocket.
Supplement expenses combined with everything else sure adds up quickly. To name a few, there are doctor appointments (most of which are specialists, and I now have co-pays that are double that of my previous plan), travel for out of state care, mobility devices, and an at home ventilator that helps me breath due to a secondary disease that limits my respiratory muscles (this was discovered after and is attributed to my mitochondrial disease). We need legislation like H.R. 2501, the Medical Nutrition Equity Act, and the corresponding expanded coverage to help pay for out of pocket expenses facing people with diseases like mine.
Another way I try to manage symptoms and maintain my baseline of health is to participate in physical therapy. This was a journey all on its own. However, I was finally able to get specific recommendations and instructions from one of my doctors. Better still, I was able to find a physical therapist 5 minutes away from my house that is willing to work with me on the plan! It was a perfect combination. I began going in December of 2020, and it was fabulous (well, outside of the frustrations associated with the limited scope of my activity now, but fabulous nonetheless). For the first time since early in 2019, I was able to do something active with a purpose, a plan, and someone who listened and took action based on my needs. Since the plan year was starting over in just one short month, I went twice a week and really enjoyed it.
These appointments aren’t luxurious, frivolous asks. It’s necessary, and has been ordered by my doctor in an effort to help me try to maintain some physical capabilities. Unfortunately, my new insurance will only cover 20 visits per year. That takes my visits down from twice per week to less than twice per month. I’ve called my insurance multiple times, as has my therapist’s office. Depending on who we talk to, it’s a different story. The same is true for my son’s needs for physical, occupational, and speech therapies. We want to appeal, ask for the paperwork and process information, but are told it’s a “hard cap.” One person did say we could send in letters asking for more visits, and we are in the process of doing that now. Then we’re at the mercy of the decision makers, who have never laid eyes on me and likely know little to nothing about my condition or disease.
Twenty visits per year might be just fine for someone who has an injury that requires physical therapy. However, while no one likes or wants to deal with them, injuries will often (though not always) get better. For some, the goal of PT is to get the person back to full strength and be on their way. With a rare disease and the corresponding needs I have, my work will not be “done” in 20 visits. Right now, my choices are to continue going weekly and hope I get more visits approved by the time the allotment runs out, or space the visits out to be once or twice per month. Neither case is ideal, or acceptable. I know I’m not the only one experiencing this, either. This health insurance coverage is inadequate, and it needs to be addressed so people can get the access to services they need.
My Motivation and Inspiration
I advocate and raise my voice because rare disease personally impacts me and my family every day now. The physical and emotional tolls are heavy. Being a parent trying to navigate these times while managing everything else is incredibly difficult. The corresponding mental health aspect is important to keep in mind and address as well. One of the most helpful things for me has been to share my story and connect with those facing similar situations. I want others to know they aren't alone, or at the very least, know that they’re not alone in being alone. I want to reach out, build community, support, be supported, work to right the wrongs that impact so many, and be a part of bringing an end to rare disease.