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Family and Community Support

Program: Advice for Adults with PKU: Improving Your Life by Returning to Diet
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Andrew Schorr:

How do you get people to understand the subtleties of PKU?  So it’s maybe a family member or a friend or a spouse who notices it more.  How do you do that?  Like would you recommend that an adult come with a close family member maybe or a girlfriend or boyfriend or spouse to kind of be both support them but also help share their perspective on it?  How do you approach it? 

Mr. Dineen:

I think that if the person is open to having somebody else come to clinic that that’s often an excellent idea.  And I think Matt expressed very well a couple of times when he was talking, you know, that it’s hard for him sometimes to either, first of all, seeing that there were any differences and also to see some of the improvements that have occurred in his life, and it’s sometimes easier for people on the outside to see those things.  So, as I said, if somebody is open to that idea I think it can be an excellent idea for a lot of different reasons.

Andrew Schorr:

All right.  One thing I want to get out right away is so someone who is an adult, young adult or maybe depending on what age may not really have clear, well established healthcare resources.  Matt, you mentioned you had a primary care doctor but you certainly didn’t have a metabolic specialist on your team.  And, Matt, I recall you were working at one employer in the Chicago area and then like so many people, too many people, you were laid off, and about the time you were going to this educational seminar you were actually between jobs, so the whole idea of how do things get paid for.  And then getting involved with healthcare providers you either didn’t know or going back sort of in time, that’s a big change too.  

Let’s talk about that, Maryam.  There are support programs in the state of Illinois, it varies by state, but Maryam, there are programs, right, to help people with financial or drug support, right? 

Ms. Naziri:

Yes, most definitely there are programs for patient assistance.  Number one, with the formula we have the formulary program in Illinois which provides the medical formulas, the PKU formulas at no cost to the patient.  So that’s definitely a big bonus for our patients coming back to clinic that might not have insurance or might be, like you said, in between jobs, things like that.  If a patient is on Kuvan there’s a program called NORD, National Organization For Rare Disorders, which if they qualify financially can potentially help them or assist them with the cost of the co-pay with the medication called Kuvan and the Phe levels, the phenylalaline levels, as well as the different...

 

Andrew Schorr:

Right.  There’s a patient assistance program too.  There’s another one called BPPS.  I would mention to our audience if you’re joining us for the first time or just didn’t hear this other one, last year we did do a program, I think we’ve done a couple with folks from NORD and from BPPS programs.  Now, we should point out that the state assistance, Rich, is going to vary by state.  So Maryam just mentioned Illinois.  That’s going to vary by state, and so you really need to check with your provider, Rich, to see what’s available where you live, correct? 

Mr. Dineen:

That’s correct.  And I think particularly for younger people lots of life changes either, you know, sometimes might be relocating to a different state, sometimes finishing school, accepting a job in a place that they haven’t grown up.  It is important to look into some of those things to try to contact a center that specializes in PKU and try to find out ahead of time if you can what are some of the resources in the state.  For example, you may have grown up in a state where your PKU formula was covered in some form but potentially may be moving to a state where the same program doesn’t exist.  So sometimes having to figure out how do I remain on the same treatment that I’m on and that I’m comfortable with but keeping in mind that I might be required to cover certain aspects of my treatment that I didn’t before, and maybe there’ll be other aspects of my treatment that weren’t covered before and now they are.

Andrew Schorr:

Right.  You have to go into this with your eyes open.  Let’s face it, folks, healthcare and healthcare coverage varies a lot just if you’re changing jobs or without work or where you live, and then PKU being a rare condition it’s different state by state.  But fortunately there are these national programs again, the NORD program that Maryam mentioned, and the BioMarin program, BPPS, and perhaps those can be resources for you.  It’s certainly worth checking, and folks like Rich Dineen at University of Illinois Medical Center deal with this every day in discussions and Maryam at Chicago Memorial Hospital. 

We’re going to take a break and when we come back we want to start addressing some of your questions.  And remember, you can call us at 877-711-5611, 877-711-5611.  You can send an e-mail to pku@patientpower.info.  We want your questions.  This is your program.  We’ve got some great guests.  Let’s find out more from Matt, his tips for other adults wanting to get back in PKU care and also from Maryam Naziri, registered dietician and Rich Dineen, genetic counselor.  We’ll be back with more Patient Power and a discussion for adults with PKU right after this. 

Welcome back to our live webcast as we’re discussing helping adults get back to PKU care, returning to diet, treatment, whatever is right for you, really getting started.  We heard from Matt Arch from Villa Park, Illinois as he really eloquently described making the decision after 20 years to get back with what ended up being a wise choice, getting back with PKU specialists and now is really committed to it and seeing benefits in his relationships, his social skills, and really just feeling better, his energy, just feeling better about himself.  So I’d urge adults listening, if you have friends who are adults with PKU and maybe they’re really not with the program, if you will, to really have that personalized care and a plan. 

Okay.  We invite your questions, the number, 877-711-5611, or e-mail to pku@patientpower.info.  We’re going to go for another half hour.  Now, I want to mention a couple of things.  This is our 13th PKU program, so the week of March 16th we’re going to be playing on patientpowerradio.com, PKU programs, replays all day at patientpowerradio.com.  So it’s kind of like all news radio for PKU, never been done before.  So you can be at work or at home and it will just be playing in the background and listen in.  So I urge you to do that, tell everyone you know with PKU because this is a first, and I’m so delighted that Patient Power can do this. 

Also.  The first week in May, the PKU awareness month, we’ll run PKU the whole week on patientpowerradio.com.  So got a big library of content, but let’s get back to this issue of adults. 

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