Transition to Adulthood with a Chronic Illness: Health Insurance

Often times when you have a chronic health condition, just keeping track of your medicines can be hard enough, but keeping your insurance at all times is very important. Here are some tips from patients and their healthcare teams at CHOP on understanding insurance.


Transition to Adulthood with a Chronic Illness: Health Insurance

David Piccoli, MD: It's extremely important for us to help the families to understand that things like insurance are incredibly important for their children.

Anne Grant, MSN, CRNP: Insurance is the dirty little secret you've got to talk about.

Keyshla Torres: I won't think about it. Like, when I was 17, that wasn't in my mind, so I didn't have no idea about insurance. I didn't know how to apply for insurance.

Faheem Johnson: I knew I had no idea in a sense of the necessary things with insurance, all the technicalities.

Anne Grant, MSN, CRNP: Because it's not a very interesting subject, it seems complicated, like math, and so it's something a lot of people like to avoid.

Charles Rawlings: It's a pain, it's a pain, yeah. It's a pain, but somebody’s got to do it.

GI Patients Moving to Adult Healthcare - Keyshla Loses Her Insurance 

Petar Mamula, MD: Even at the very beginning, when I first met her years back, she would come for visits with her father, and her father would not say very much. She would be the one who knew what her condition was, what medication she needed to be on. I thought that she would be a perfect person who would have a relatively easy time transitioning from the pediatric world to the adult world, but things got complicated because of the health insurance.

Keyshla Torres: I was taking medication. I was taking them for like 8, 9 years, and I ended up running out of them. I couldn't get no referral because I didn't have no insurance, so I had just to stop taking them. I had no idea how expensive they were. I found out that the Remicade was really expensive, and that was just the medicine. Now, if you put it with the hospital and the assistance they were going to do for you and all the injections and everything, that's going to be more money, so, pretty much, that was really expensive.

Petar Mamula, MD: Some of the medications that she, luckily, responds to cost in the order of $20,000 or $30,000 a year, and that is absolutely, prohibitively expensive. The impact is tremendous because in Keyshla's instance, because of that, she has missed some appointments. She was not able to do some of the tests that would be, also, quite expensive if there's no health insurance coverage. And any delay in care because of that can make a disease more active and can be, then, more difficult to treat.

Susan Peck, MSN, CRNP: A lot of young adults who are healthy will go many years without insurance coverage. When you have a chronic illness, you can't do that because a four-day hospitalization can be very, very expensive, and your medications are very expensive. So if you don't have insurance coverage and all of a sudden you land in the hospital, who's going to pay that bill?

GI Patients Moving to Adult Healthcare: Keyshla Makes a Comeback 

Anne Grant, MSN, CRNP: What I admired about Keyshla's story is that she took a lot of personal responsibility. I saw her go from, basically, a dependent child to a more full-functioning young adult in a matter of a few months, and I think that was a credit to her strength, her determination, and her responsibility that it was her problem to deal with and that she needed to step up.

Keyshla Torres: And now I have a job, which is part-time, so when it becomes full-time I could get benefits for health insurance.

Petar Mamula, MD: And I think now she's in a much better place than she used to be, and I think we're moving in the right direction to eventually fully transition her over. We're almost there.

Keyshla Torres: Because I'm so used to CHOP, sometimes I don't even want to leave it. I'm so used to it, I know how to get around the whole hospital. And leaving to a new hospital is like — yeah, it's like going to a new school. So, yeah, I'm excited, meet new people, meet new doctors. I guess it's a new chapter in my book.

GI Patients Moving to Adult Healthcare: Planning Ahead to Keep Health Insurance 

Faheem Johnson: Insurance is important because I need care. I need my treatment for my allergies, for Crohn's especially, Crohn's disease, so I definitely — and I need the medicine. So I'm going to need to have some type of insurance.

Susan Peck, MSN, CRNP: More and more of the chronic illnesses are now being covered by Social Security and medical assistance, or Medicaid. It all depends upon hooking up with the right advocates so that you do have healthcare coverage.

Sarah Reilley: When I graduated college, I didn't have a full-time job, and I was at that age where my insurance was-- I was not going to be on my parents' insurance anymore. So I was kind of in a pickle there, and I didn't know what to do, so my mom kind of helped me out, and we filed for medical assistance through the state.

Faheem Johnson: I know that we did make a lot of calls and asked a lot of people about what options, you know, what can we do, especially for adult care, as I'm going to be seen as an adult. What kind of benefits can I get? And so I do know there was a lot of calling and a lot of paperwork.

Sarah Reilley: They help you out every way they can, and I got insurance for that time that I wasn't employed.

Susan Peck, MSN, CRNP: It's important that the patient know what they need, know what's covered, and know how to advocate for themselves. So the transition is the perfect time to start learning how to do that.

Related Centers and Programs: Division of Gastroenterology, Hepatology and Nutrition