I'm Aware That I'm Rare: Ashley Abuel, RN, BSN
Ashley Abuel, RN, BSN is the outpatient fetal/pediatric cardiology nurse manager for the Children’s Heart Center at UCLA Mattel Children’s Hospital. Ashley has also assisted in the coordination and development of a non-profit medical clinic created to serve uninsured/underserved pediatric patients. In this episode, she discusses working with the inpatient team to help provide a smooth transition for patients and families as they are discharged from the hospital and adjust to outpatient care and how she helps to provide additional informational/emotional resources for patients and parents, including navigating insurance authorizations.
My name is Ashley Abuel, and I am the nurse manager for the Children’s Heart Center at UCLA in UCLA Mattel Children’s Hospital. I’ve been a nurse coordinator in pediatric cardiology I think for over nine years now, working about 60% as a manager/administrative and then 40 percent still clinical nursing, which I enjoy and I’m glad that I get to keep doing that. Then I work with the other nurse coordinators and other staff here in the Children’s Heart Center to help patients get what they need, whether that be a doctor’s visit or an echocardiogram or medication.
In the Children’s Heart Center, we see patients from 0 to 21 and actually even prenatally, because we do fetal echocardiograms where we do ultrasounds prenatally to look for any congenital heart disease. I enjoy being a nurse and working with our wonderful patients and families. I love working in pediatrics, because I get to work with not just the patients, but also the families. In pediatrics, working with the parents and the families is critical and I really enjoy that.
First and foremost, I want to give support because it’s challenging. It’s incredibly difficult to go through, hearing that your child has a chronic illness or something as serious as pulmonary hypertension or something that’s going to require a procedure or a surgery or require lifelong medications. First, I want to provide support to the parents and to the patient however old they are. That’s always top of mind. Then I want to try to provide education and help answer any of their questions, so that that way I can help give them the information that they need to be the best advocates for their child and provide the best care for their child.
Usually, on the first or second visit, the doctor identifies that a patient needs a particular medication. There are some medications for some things that can be prescribed pretty easily and most insurances cover it. The prescription goes right to the pharmacy, and then the family leaves here and goes right to the pharmacy and picks it up. Unfortunately, that’s just not the case with the pulmonary hypertension medications. The pulmonary hypertension medications in particular require a lot more work and time. I think it’s important for families to know and understand that for pulmonary hypertension medications when a doctor says, “I want to start you on this medicine,” it’s a process. It’s a process to get the medication. It doesn’t happen overnight. Sometimes it may be a few weeks to even a month or more before you get the medication and start taking it.
The biggest process is the prior authorization process, because these medications are incredibly expensive. We want to do all that we can to ensure that the insurance approves the medication, because they’re really honestly too expensive for families to pay out of pocket for. When a doctor tells me, “I want to start this patient on one of these medications,” we want to check and see with their insurance is, because we have a kind of a good idea sometimes of what is covered and what’s not or the process that we need to go through. It can be a little bit different depending on the type of insurance.
Some of the medications can just go to like a local pharmacy. Others definitely take a lot longer and take multiple calls of following up. We try to do all of that for the families, because it is a lot to navigate and that’s what we’re here for, to try and help however we can. Insurance authorization for the medications is really the biggest challenge. After doing this for several years, we’ve learned the nuances of the different medications and what’s required and so forth. With pediatrics, that’s a very interesting challenge that some of the listeners will have if they have a child or a teenager who is on these medications. That is the fact that a lot of these medications, the vast majority of them, are not FDA approved for children under 18. The problem then becomes well, what do we use? If we can’t use those, what do we use?
Our pediatric cardiologist here are extremely well-versed in the different medications that are available, and we use nearly all of them that are approved for adults. We have to use them for children, because there’s nothing else available. These children are too important to wait until they’re 18 to start the medications. We fight for that, and we help to explain that to the insurance companies. There are some more research studies being done and some of these meds now do have approval for children. That’s exciting too that we’ve kind of made some of those advances in the care of children with pulmonary hypertension.
For patients who don’t qualify for Medicaid or Medi-Cal, we do have a problem sometimes where patients will have insurance, but perhaps the insurance only covers a certain amount or they have a huge copay or a huge deductible. Those amounts can sometimes be just really too much for families to bear. Fortunately, there are some organizations that are able to provide some assistance with copays or with prescription costs. We do run into the problem then too when patients switch insurances. Let’s say you have one commercial insurance plan through your work and then you maybe you changed jobs and change over to a different insurance. We have to go back and get a new prior authorization. There are some companies that help provide medication, certain medications during that time or in that kind of situation. Sometimes, unfortunately patients then find themselves in the scary position of not having their medication. That’s always worrisome too.
We’ve definitely been in that position where we have had patients that were on medications for a long time. They switch insurance, and then the new insurance says, “Oh wait. They don’t qualify for that.” We’re like, “But they’ve been taking it for many years.” There is an appeals process. If it’s denied, we’ll generally go through the appeals process, write a letter, have a physician speak with the insurance physician, do different things to try to get it approved. The vast majority of time so we can still get it approved. If we’re really stuck, then we kind of pow wow with the physician and with the family and see if there is any alternative medication that we think might be appropriate that would help the patient and that we could get approved. With the prior authorization difficulties that we face sometimes, we really try not to just stop if we hit a roadblock. We have to keep trying to find ways to go over or around roadblocks, and we keep fighting.
I really feel like one of the most important things is for all patients and families to understand is that A, we’re human. We work really hard, and we really want to get everything right for every patient, but B, sometimes things can fall through the cracks. It maybe that we filled out the enrollment paperwork for medication. We sent it into the company, and then a couple weeks later we still haven’t received anything. The patient hasn’t received any medication. We don’t always know that unless the patient calls. If you feel like it’s been a certain length of time, it’s been a few days, a week, a couple weeks, however long, and you haven’t received your medication or haven’t heard from anyone, give us a call.
I would always rather have families call me and follow up with me. I can check the status and look into it and find out where it’s at. But it does happen, whether it’s something that either got kind of lost in the shuffle here on our end that we had spoken with the doctor or it took a little bit longer to get the referral out than we have planned or we were working on the paperwork or whatever reason. Sometimes there can be a little bit of delay in sending out the referral, but then also sometimes it either gets lost at the company or the pharmacy or the pharmacy’s working on the prior authorization, but maybe they sent something to us and we didn’t receive it and so we didn’t know.
Believe me, after so many years, there can be all kinds of different little roadblocks that can stop up the process. It’s just so important. Please just give us a call if you haven’t gotten your medication, if you have run out of your medication or you are about to run out of your medication, because we don’t know. We don’t know unless you call us and then we’re more than happy to help and see what we can do to get the process moving along.
The other thing that I would say too is that it’s always good to try to refill your medications as early ahead of time as they will let you. Some insurances will let you do it like five days before your run out. You want to try to do that, because if it happens to be the month that you need a new prior authorization or that the pharmacy needs a new refill prescription order from us or whatever it might be, those little pieces of the puzzle can take some time sometimes. It’s really important to kind of keep following up on those things. Reach out to your provider or to your doctor or to your nurse and we will help you out with that.
My name is Ashley Abuel, and I’m aware that I’m rare.
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