Recently, I spoke for the first time at a hearing. I was more nervous than speaking at a press conference. More than likely, it was because I knew that I was speaking to the people who could save lives. I forgot to introduce myself, my hands shook, and my heart raced. This isn’t anything that I ever saw myself doing or that I feel comfortable with. I did it though. I did it for the patients like my son. Sometimes, we must get out of our comfort zones to save patients' lives. We need others to do the same. Forget perfection. Bring your facts, heart, and your voice. That's enough.
After I shared my son's story and the stories of only a few of the many patients that I hold dear to my heart, I was immediately met with a representative saying. “We’ve all had bad experiences.”
The fact that the mail-order pharmacies that we are forced to use are purposefully shipping all medications that should be stored at room temperature in only bags all year round knowing that they could lose potency or become toxic in trucks and mail-boxes that can reach up to 170 degrees is just a bad experience per this legislator.
The fact that I almost lost my son due to this negligence and many other lives have been risked as insulin arrives frozen, children’s liquid oral medications arrive weakened, tablets break and crumble, and gel capsules arrive sticking together is just not a big deal to this representative. The fact that MS patients have lost their ability to walk, chemotherapy patients have experienced unnecessary interruptions in treatment, and pregnant women with diabetes have had to go without eating due to unnecessary delaying of medications that at one time they could go to their local pharmacies and have in their hands in 15 minutes is just a “bad experience.”
I agree it was a preventable and horrifying experience, but the worst experience is that our regulators and legislators fail to protect patients like our son. The fact that I almost lost my child’s life for the greed of a mail-order pharmacy is just as bad of an experience of witnessing our legislators failing to act to protect human lives from the greed of corporations. The citizens of the US are seeing their trusted pharmacies close to the point that many counties across America now have only one pharmacy due to the abuses of PBMs (Optum RX, CVS Caremark, and Express Scripts.)
I refuse to accept a “get over it” attitude from our legislators and regulators. Where are their hearts, integrity, and compassion? To our true supporters, we need you. We need your voice. Please continue to write your legislators. If you are in Missouri, I could use your help.
Please email me at loretta@uniteforsafemeds.com
You can find the names of the legislators on the committee here: https://ballotpedia.org/Health_and_Mental_Health_Policy_Committee,_Missouri_House_of_Representatives