I was recently invited by the Immune Deficiency Foundation (IDF) to travel to Washington D.C. and speak to Congressmen and their staff about the Patient’s Access to Treatment Acts of 2013 (PATA). This was an experience that taught me a lot about the connection between our government, laws and amendments to laws, and how not for profit organizations advocated for those who need them.
Traditionally, insurance companies have charged patients fixed co-pays for different tiers of medications: generics (Tier I), name brands (Tier II), and formulary-excluded “non-preferred” brand medications (Tier III). However, Some health insurance policies are now moving necessary costly medications into “specialty tiers” that utilize high patient cost-sharing methods. They require patients to pay a percentage of the actual cost of these drugs – from 25% to 33% or more, often costing hundreds, even thousands of dollars, per month for a single medication. These practices are placing medically necessary treatments out of reach of average insured Americans. PATA would limit the amount of cost sharing between the insurance companies and patients, allowing them to get their treatment.
When the IDF asked me to travel to Washington D.C., I was honored, surprised, and a bit nervous about what to expect. A representative from the IDF helped me secure my flight, hotel accommodations, and provided an itinerary for me. She also told me what expenses were covered by IDF and what I had to be prepared to pay for myself. IDF covered airfare, hotel accommodations and a few meals. I had to pay for transportation to and from the airport and a couple meals.
On May 7th, I flew from the Lambert Airport in St. Louis to the Regan International Airport in Washington D.C.. I was amazed that I could see the Washington Monument from the airplane before we landed! Later, I found out that the hotel I stayed at was walking distance from Capitol Hill. I met everyone who traveled like me at dinner that night. I was surprised because there were thirty states represented: I represented Missouri. Dinner was provided for all of those who traveled and we went through a training session to prepare for the next day. They trained us in how to talk to congressman, what we were advocating for, and went through the itinerary for the following day.
On May 8th, I was scheduled to attend six meetings with the House and Senate staff to discuss the PATA bill. I went to these meetings with another college boy who was representing Minnesota. It depended on if the staff member supported Missouri or Minnesota as to which one of us (me or the other boy) would lead the meeting. We only had about five to ten minutes to explain what the IDF was, what PATA contained, and why this was an important issue to understand. All of the staff members that we met with were very concerned about our health and the health of others and seemed very interested in supporting PATA.
My experiences on this trip were unforgettable. Whether it was being assertive to get my point across, explaining my health issues and the bill while being professional, or meeting individuals who were suffering from an immune deficiency like me; this opportunity was incredible. It is amazing to see how fortunate we are. There are so many individuals out there that are suffering with a serious condition that struggle every day just to get out of bed. This was an eye opening experience and I hope to be able to advocate for the IDF again in the near future. I am very passionate about this topic because I am one of those individuals that live with an autoimmune disease.
What is interesting about the IDF is that their main “mascot” is a zebra. Now, you may be as confused as I was when I first heard this. Why would such an unusual animal represent the IDF? I found out that when doctors go to school, they learn the saying, “When you hear hoof beats, think horses, not zebras.” This means, when doctors treat people they should think about common illnesses, not unusual ones. However, sometimes people get sick many times, their illness doesn't get better or they have an unusual infection. When this happens, doctors should question whether the person might be a zebra with an unusual condition, like primary immunodeficiency disease, and not a horse with a common infection. Individuals with primary immunodeficiency diseases are rare in the medical field.
Overall, my life has been a continuous journey through tremendous health issues. Getting up every day hoping to have enough energy to sustain the activities you want to do is not a way of life. I pray that the next cold doesn’t turn into a huge infection, and that the next time I’m sick, I don’t need another surgery. I cannot explain to you how much these infusions help. My quality of life has improved and I feel a lot better. Although there have been challenging times in my life, I have always found a way to keep moving forward. You can’t change the past, all you can do is look at the positive aspects and search for a deeper understanding. Yes, every day is a struggle, but the support I receive is what keeps me going. My intention is to not only create a better quality of life for myself, but also for all of those patients struggling to receive their treatments. The battle never ends, but I keep fighting.
Class of 2019
Program in Physical Therapy
Saint Louis University
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