Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients.
I am Laura Bonnell, the mother of two daughters with cystic fibrosis. For 30 years, I have advocated for my daughters to ensure they get the care they deserve, and to promote legislation that will assure their basic rights to care.
A couple of years ago, when my daughter Emily was 25 years old, she had a horrible lung infection. Emily had already had 15 lung infections already in her short life, and this exacerbation was the worst. Emily called me from her apartment and said, “I can’t talk, but I need you to pick me up and drive me to the emergency room.” Her lung pain was that bad.
It was a 45-minute drive to her cystic fibrosis hospital from her apartment. She was admitted right away. She went into surgery, and the PICC line was placed in her arm so she could do intravenous medication for about 6 weeks at home. On our way home, we had to stop at the pharmacy to pick up her oral medications. The oral medication we needed the most was linezolid. It treats bacteria and it’s a powerful pill. We called ahead to our local pharmacy. The pharmacist said they were out of the medication. We asked if they could find it for us at another pharmacy because we only had a one-hour window before we had to be home to do her IV dose of medications. Then the pharmacist changed her story and said they actually did have the pill, but they couldn’t give it to us.
We were confused and out of time, so we drove to the pharmacy and went inside instead of using the drive-through. Emily was pale and exhausted. When we were standing before the pharmacist, she said the real reason she couldn’t give it to us was because we didn’t have prior authorization. Prior authorization is needed before your insurance will pay for certain medications. The hospital discharge nurse assured us before we left that they had taken care of this, but somewhere in the process, things got messed up. The hospital pharmacy was closed, and this meant we couldn’t fix the problem until the next day. Emily couldn’t wait that long for this medication.
The role of patient advocacy
At this point, with only two days spent in the hospital, Emily was not even close to turning a corner. I said to the pharmacist, “If you’re not going to give us the medications, I am going to need you to take all the signs down that say things like, ‘We’re here to help.’ We are caught in the middle by an insurance situation that is not our fault. We are covered by not one, but two health insurance companies, and we’re not leaving until we get her medications.”
At this point, the pharmacist was frazzled, Emily was crying, and I was desperate. I was being polite but direct. “I am not leaving without her medication,” I said. “Please give us three pills so we can make it until tomorrow. Look at my daughter — please do not compromise her health. I don’t want you to get fired, but even more than that, I don’t want my daughter to relapse.”
She stood there looking at us for a minute, and I could see the stress on her face. Then she quickly threw three pills in a prescription bottle and handed it to me. She didn’t say a word. Just looked shaken. I thanked her, and we left.
When we got home, I realized she put the pills in an unmarked prescription bottle — no linezolid label. Nothing. I told Emily that if these pills didn’t have the name written on them, she couldn’t take them. Fortunately, when I opened the prescription bottle, I saw the name of the medication written on the pill. Now I only had to Google side effects. The entire situation was scary and unnecessary. This is why we advocate.
