Establishing a new medical team after moving to a different state

Moving is simultaneously one of the most dreaded and exciting events in life. There’s the thrill of new beginnings, but trials and tribulations can also occur, especially during a long-distance move. Having just settled in a new state, I’m now in the thick of the next complication: finding a new medical team.

I never imagined this duty would be a concern so early in my life. But in September 2020, at age 36, I nearly died from the ultrarare atypical hemolytic uremic syndrome (aHUS). I had permanent damage from multiorgan failure and now deal with several comorbidities. Further, for the rest of my life I’ll need monoclonal antibody infusions, which cause a slew of symptoms similar to chemotherapy side effects.

Since then, I’ve required regular visits with a large team of doctors who basically keep me alive. A few years ago, my family moved to North Carolina from South Carolina, and that transition took months. Because of complications with Medicare and Medicaid, I had to drive almost three hours to receive my biweekly infusions for the first few months after that move.

Recommended Reading

February 19, 2025 News by Lindsey Shapiro, PhD

Interactive e-book aims to help children better understand aHUS

Now here I am, changing my entire medical team after moving to Florida. Because of the hang-ups I experienced during my last move, I knew I had to work on lining up my infusions first. I started this process more than two months before the official move, but I still had to do my first infusion in Florida a week later than normal.

In that time, I caught a cold and now have a barking cough I can’t shake. The eculizumab I take is an immunosuppressant, but when I’m taking it on a regular schedule, oddly enough, I seem to get sick with basic illnesses much less often.

I got my new hematologist and infusion schedule lined up, but moving to a new state also meant I had to reapply for all of the state benefits I receive. That meant switching over my enrollment in Medicaid, Medicare, and the Supplemental Nutrition Assistance Program, which can take more than 30 days to process. I’m still waiting for this enrollment to be completed.

On top of that, I now need a new primary care doctor, nephrologist, rheumatologist, and cardiologist. Getting established with these providers also takes time.

The move affected my prescription medications as well. Even though I’m still using the same chain pharmacy, I’ve had issues transferring my prescriptions. I spent four hours on the phone the other day trying to fill one prescription, and I ran into more issues trying to pick up another one this week. It’s never-ending.

While waiting to get in to see new providers here in Florida, I needed medication for this cough. I ultimately had to ask my new hematologist for help, because a severe or prolonged illness could lead to a relapse of my aHUS.

Resources can ease the transition

I wouldn’t have made it this far without help from Facebook aHUS support groups, my drug representative at Alexion, AstraZeneca Rare Disease (which manufactures eculizumab), and The Assistance Fund (TAF). I’d heard about these resources early on in my journey, but I wasn’t well informed, so I didn’t use them until now. They’ve been invaluable.

Organizations like TAF and the National Organization for Rare Disorders (NORD) may be able to reimburse patients for certain expenses (such as transportation to and from appointments), provide financial assistance for copays and medications, or even cover flights and lodging for medical trips. It was helpful as I was getting my infusions lined up in Florida.

My personal drug representative from Alexion gave me helpful information about TAF and NORD. She also was able to look up and contact potential new medical providers in any U.S. state or territory when we were still considering where to move.

Lastly, my insurance company recently sent me information about kidney programs that might benefit me as someone with stage 4 chronic kidney disease. It also sent health assessments to see if I qualify for any other programs.

Even though aHUS is a rare disease, many assistance programs and resources for it are available. Being thrust into this world was terrifying and overwhelming, but programs and funding can help make life more manageable.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.