by Haley Jensen, kidney transplant recipient and NKF patient advocate
As a kidney transplant recipient, medication is one of the most essential parts of my ongoing care. I've been very "well-trained" since I received my transplant 11 years ago that I should never skip a dose without talking to my doctor. I take that advice very seriously as I risk losing my transplanted kidney if I miss a dose. Even though having a suppressed immune system is a scary prospect right now, the last thing I need is to add transplant rejection to the mix. With that said, it can be scary to think about what could happen if I cannot get my drugs because we have supply issues for immunosuppressants.
I'm fortunate to have good coverage through my health insurance, but I'm not able to build up much of a reserve in case there's an issue with my order, a stressor in the best of times. But, these are not the best of times, so it's easy to get nervous when I feel like I'm running low on doses. I've had a particularly complicated transition since I'm currently quarantining with my family across the country from my home in Boston.
I was feeling a little paranoid when I came to visit before the crisis picked up speed, so I packed extra medication thinking I likely wouldn't need it...and turns out I absolutely did. This was a big help initially as I figured out how to get a regular supply of medications in Colorado. Fortunately, I've used mail order pharmacies for years and can't recommend them highly enough. It takes some time to set up with the pharmacy and will vary depending on which service you use, but once you're set up, it's such a helpful option to avoid trips to the pharmacy, which is particularly important for at-risk individuals like me. Using mail order has helped a lot with getting my critical medications during this time.
Another helpful change in recognition of these challenges is that due to COVID-19, increasing my refills to a 90-day supply for my immunosuppressants is currently an option! My insurance normally only allows me to fill a 30-day supply of my "specialty" medications. Having fewer delivery interactions and more supply on hand is a big weight off my mind. I found out about this exception through NKF, which has been instrumental in advocating for patients on many issues related to kidney disease in the current crisis and educating the community about precautions and available resources. I was immediately interested and called my insurance, and after a couple of calls between the agent and my doctor's office (and plenty of patience), I received a 90-day supply of my immunosuppressants just a few days later.
Medication is the foundation for a kidney transplant recipient's care, and even though COVID-19 has presented some challenges, patience, persistence, and preparation make a huge difference. I've spent many hours on the phone, communicating back and forth between multiple pharmacies, insurance agents, and physicians to figure out how to get the care I need - all of whom have been determined to help.
Although it has been confusing and a little frustrating at times, everyone I've spoken to has been kind and helpful, even in the moments I've lost my cool from the stress. NKF's staff has been a constant support during this time, and their dedication to hearing patients' needs and acting on them is truly inspiring. Even in this time of unknowns, the number of people who've shown tremendous dedication to supporting kidney patients has eased my mind about getting through this crisis, no matter how long it continues.
Haley Jensen has been involved with the National Kidney Foundation as a volunteer patient advocate and speaker since 2015. She is a kidney transplant recipient living in the Boston area and is passionate about serving kidney patients both as a volunteer and in her work at CVS Kidney Care. When she’s not thinking about kidneys, Haley is likely to be found exploring the great outdoors or digging into a good meal.