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Last week, I was honored to be able to attend the National Community Pharmacy Association (NCPA) Convention with the documentary producers from Would You Like Shots With That. As they followed me around for the patient’s perspective and interviewed many pharmacists, they were able to capture many truth-telling stories and moments that will certainly point out issues with pharmacy today. NCPA has long been an association that advocates on behalf of community pharmacies. Their advocacy does help patients like my son. I believe that there are some at NCPA that don’t know who I am or what drives my passion behind my advocacy.
At the NCPA convention, I was shocked to find that a Pharmaceutical Care Management Association (PCMA) lobbyist was at the community pharmacy convention. PCMA is the lobbying association for the pharmacy benefit managers (PBMs) that force to their own mail order pharmacies such as Express Scripts, Optum RX, and CVS Caremark. After finding out that the was there, I decided to track him down. I realized this was a lobbyist that I met in Oklahoma at a legislative meeting who was speaking against a patient's choice of pharmacy.
“What are you doing here?” I asked. With a shaky voice and after he realized who I was, he would claim that he was trying to learn how PCMA could help community pharmacists.
I don’t believe him. I was informed that he was sitting in meetings that involved direct contracting which may include contracting directly with an entity and cutting out the PBMs.
I questioned him for 20 minutes. Our conversation would end after I asked if he would be okay if his child had cancer and the tumor was rapidly growing in their body, but he couldn’t use his local pharmacy or hospital pharmacy to get the medication that his child’s life relied on. Instead, he would be forced to an insurance/PBM-owned mail order pharmacy that would take weeks or a month before his child could start the life-saving treatment as the tumor rapidly grew in his child’s body. I have more than one of these stories from parents and caregivers. The lobbyist may know that he may be able to afford the price out of pocket without insurance or may be fine with allowing the tumor to grow inside of his child as all he would say is the same quote that he would tell our legislators as he stated he supports whatever is affordable and accessible. I reminded him that PBMs pharmacies are neither affordable nor accessible as their pharmacies have 1-star ratings on most consumer reports sites and have been found price gouging several patients and taxpayers in several states by millions of dollars. Sometimes this occurs under the disguise of a lower copay. I found with a lower copay that PBM reimbursed their own pharmacy 10X than our local pharmacy behind the curtain. He was quick to blame the poor contracting decisions made by the federal government and employers but placed no blame on his association, PBMs, or insurance companies that created the contracts in the first place.
Next, I shook the hand of the chair of the Federal Trade Commission (FTC) Lina Khan who was speaking at the event. The FTC is tasked with protecting the public from deceptive or unfair business practices and unfair methods of competition. Chairman Khan gives me a lot of hope. She reminded the crowd that the FTC is allowing the public to speak monthly about issues. Please, if you can, share your stories and concerns about being forced to mail order in these public meetings.
Most importantly, Chairman Khan reminded the crowd that the FTC is limited in what it can do, so it’s critical that our representatives hear from us and that we apply the pressure needed to push forward legislation that will protect us. Please put political division aside and reach out to your legislators to demand protection from the many unethical practices of PBMs. To save pharmacies, we need patient protection from delays and improper temperature control that many faces with mail order. We need our pharmacies to be paid above their cost of medications, so they will stay open so we can have the much-needed patient choice of pharmacy and medication access. Often, the PBMs and insurance companies make more money than the pharmacists filling prescriptions. Many insurance companies or PBMs are purposefully reimbursing pharmacies so low they end in the red, causing pharmacy closures. Chain pharmacies must be mandated to be staffed properly and provided with the time to serve their patients. These are all issues that can be corrected with legislation.
When Chairman Khan was scheduled to speak, I wanted to sit close to the front row if possible. I wondered if it was okay to sit in the several empty seats in the front. I asked a pharmacy friend. He said that it would be okay. I made my way to the front. I looked beside me and the guy I just so happened to sit next to looked at me. I glared back at him. We both knew each other but we couldn't figure out how. Then, I realized that this was the student that was part of the Oklahoma study that showed 80% of packages are reaching temperatures deemed unsafe by the FDA's standards. The study was inspired by Wesley's story. The last time we saw each other I had curly hair, and he had his hair styled differently. We hugged each other and he introduced me to his colleagues. Seeing these hero students sitting beside me. I felt as though I was right where I was supposed to be.
As I fight to save pharmacy access for patients like my son, there are many I’m reminded many times that I’m not wealthy. I don’t have a front-row seat to our legislators like PCMA lobbyists as the lobbyist that I met in the hallway was a senior vice president of government affairs for the state of Oklahoma. He already has his foot in the door with legislators. Our nonprofit is not funded, so I’m still working more than full-time and all my work for the nonprofit and as a patient advocate is a volunteer. As I struggle to even have the time to write this update, I feel the unfairness, but I focus on what we do have. What we do have is our voice and the voices of many other patients, students, patient advocates, pharmacists, pharmacy staff, physicians, and great associations uniting. Each one has the power within their voice to make a difference when they share their story and demand better from legislators. Please continue to speak to yours and learn about these issues.
Thank you for your support,
Loretta Boesing
Patient Advocate and Founder of Unite For Safe Medications
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