I live with neurofibromatosis type 2, a rare and progressive genetic disorder. Since I am missing the specific protein that suppresses tumor growth, tumors can grow on any nerve in my body. I am currently deaf in my right ear, have facial nerve paralysis on my right side, and have no vestibular (balance) system.
With no current cure for NF2, surgery is often the only treatment option. Since my diagnosis 14 years ago, I’ve endured 13 major surgeries, including a spinal fusion, brain surgeries, operations on my airway and throat, and facial nerve reanimation. Given the location of my tumors, these procedures are often long and painful with devastating consequences. However, leaving the tumors to grow is not an option. Over time, though, medical research and innovation have given me hope for my future.
In 2013 I started an experimental treatment to retain my hearing. I would be completely deaf without this medication, yet because of it I still have full hearing in my left ear – something I could never have imagined a few years before. I am so thankful for these therapies, but they are not without side effects, nor are they a cure.
It is also not easy getting these medications to begin with. Battles with insurance companies are never-ending as I have a rare medical condition with no FDA-approved treatments. Proving that my quality of life is worth the possible risks and cost of medications has been draining.
The only reason I am still hearing is because of the innovation in NF2 research, thanks to biopharmaceutical companies that develop the treatments that have changed the course of my disorder. I urge lawmakers to support proposals that keep treatments attainable so other patients do not have to jump through the hurdles I have.
This is all at risk if Congress passes legislation that imposes price-setting policies for Medicare’s prescription drugs. Price controls would disrupt the entire health care industry and remove the resources to innovate. Considering the cost of the medications I rely on, price controls within Medicare would also limit my access to these treatments. As someone hoping for the next treatment for their rare disease to be developed, I am saddened that lawmakers would consider policies that take away any chance of me living a normal life.
While my “cocktail” of medications is working now, it may not be permanent. I’m not alone in worrying about this likelihood. Patients don't just get better, they need accessible medical innovation. I urge Congress to keep my story in mind and ensure that their policies don’t hinder the research and innovation myself and countless others rely on. Our lives depend on it.
Leah Manth, of North Tonawanda, takes medications for neurofibromatosis type 2.