By Jennifer C., Alachua County
Last year, my family came to the Gainesville area because my son was admitted to Shands to wait for a heart transplant. I'm thankful that my daughter was old enough to stay back home in Pinellas County to care for her youngest brother, but our family was separated during that time. We couldn't go back and forth because of COVID. My husband and I were here in Gainesville with our son. In February, my son did get his gift heart, and he’s doing pretty good. He’s still being watched pretty closely. His health expenses are covered through Children’s Medical Services and Social Security Disability Insurance (SSDI). He’ll be 18 years old this month.
I’ve found that people often think that organ transplants are a “one and done.” They think, ‘oh after you get your transplant, you’re good.’ Well, no. It’s not that way and I knew it would be that way. I had mother's intuition that it wasn't going to be that way. I knew that we were going to have a little bit rougher issues post-transplant than we did pre-transplant. And we did. So I tried to prepare for that as best as I could. We’re still in that stage of figuring out how much he can do, how much he can move. He had a lot of in-and-out of the hospital post-transplant situations for the first few months. This is the longest period of time that he's been out of the hospital, and he’s been out for about 14 weeks.
You could say that I lost my job during COVID, but it really had more to do with the fact that I had to move to Gainesville. I wasn't able to keep my job back home because I couldn’t travel 2.5 hours back and forth. When I was working, I did not have health coverage because I was only working part-time. Part-time employees aren’t offered health insurance there. When we did have coverage, it was still very hard to see a doctor. I’d call around to different doctor’s offices trying to get an appointment, and they would say, ‘Yes, we take your insurance, but we’re not taking new patients.’ Or ‘No, we don't take that insurance.’ Then when you finally get someplace that does accept your insurance, there’s a scheduling conflict. So it’s just been difficult.
Another issue that we dealt with when we did have insurance was the limited supply of resources given by our insurance. When I would call the pediatrician’s office to set up an appointment for a flu shot, I wasn’t able to get the shot with Medicaid. The pediatrician’s office would tell me ‘oh, we don't have that bank of flu shots in yet.’ The following year we reached out to our son’s specialty doctor, and he said, ‘well, we're going to get that fixed. We’re having a day that the whole family can come in, and y'all can get your flu shot all at the same time.’ That was so helpful, but that doesn't go on all the time.
Then, to be honest with you, sometimes there are co-pays. And, unfortunately, in the past, we've been in situations where we didn't have the money to pay for the co-pay. If you just don't have it, you just don't have it. I don't think anybody with any health condition should have to worry about where they’re going to get the money for a co-pay. They shouldn’t have to worry about whether or not they’re going to have coverage next month for their prescriptions. I don't think that that's something that we should have to deal with.
I'm glad that the Equal Access Clinic is here because they have helped with a lot of things. But even this is different than a regular physician that you would see all the time. Here, you end up explaining your whole history each time you come to the clinic. The doctors here help you with the limited resources that they have, but if there are other treatments or specialists that can help you, and they’re not here at the clinic, you’re stuck. Either the clinic doesn't have access to it, or the medical specialty is only offered a few days a month. It’s limited health care.
My daughter is 22 years old. Because of her age and the fact that she's not working, she doesn't have any health insurance coverage. If we didn’t bring her in to the Equal Access Clinic for care, she would be putting off getting any kind of health care. But, if people don't know about this clinic, they’re not getting any care at all— all because they don’t have $50 to $150 to pay a doctor.
If we had access to regular health care, my daughter would be able to get to the bottom of these chronic health issues she’s been dealing with. She gets frequent headaches, occasional dizzy spells, and just doesn’t feel well in general. We keep coming back to the clinic for the same issues. Somehow the conversation turns to her menstrual cycle. They end up asking her why she hasn’t had a period in almost seven months if she’s not pregnant. So, the conversation with the doctor gets kind of derailed. She tries to tell them that her brother’s been in the hospital for nearly seven months. She’s stressed. Our family is stressed.