Health Topics

Closing Comments

Andrew Schorr:

Corinna, you’ve been listening and there are people out there who maybe are not used to sort of raising their hand and even asking for help. What would you say to maybe help them make the call whether it’s to BPPS or NORD and just sort of say let’s talk about it rather than just worry and in tight economic times of course people do, or maybe the good news is if somebody goes to the clinic or let’s say they have this 30-day trial of Kuvan and it’s working for themselves or a child but say, ‘Oh my goodness how are we going to make a go of it financially?’ What would you say to them?

Corinna:

Sometimes calling an insurance company can seem a little scary. We see a lot of advertisements on television, and we fear that they’re going to use words that we’re not going to understand, that they’re going to use language that we don’t understand, and you know that was not my experience at all. These are normal folks who understand as parents oftentimes themselves we just want the best for our kids. If this is your family’s choice that Kuvan is the best for your child you can have access to it. All you have to do is make that phone call. It’s truly that easy. These folks did not talk over my head. They didn’t use medical terminology that I didn’t understand. I truly believed they cared about me as a person and as a parent, and I felt like it was a very easy thing to do to just pick up that phone and make that call. Don’t be afraid. It’s well worth the effort to make the call and make it happen.

Andrew Schorr:

Elaina, so if people are doing that and handling all these reimbursement issues or assistance issues, that lets the healthcare team, like you’ve been for more than two decades and your colleagues around the country, lets them just concentrate on healthcare with you the patient or you the caregiver in a family, right, and that’s the way it should be.

Ms. Jurecki:

Yes, I mean, if I could spend more of my time focusing on helping the patients come up with various menus, strategies to adhere to their diet better, how to work it in with their schedules. I mean there are so many aspects of the management of the diet that you need all the time you possibly can get to be able to help them achieve this goal, but when you have to spend your time and your hours and days dealing with the insurance companies it’s very frustrating, and I have to tell you that you wind up spending a lot of time educating them because they’re very unfamiliar with this condition, and that takes time away from where you really need to be spending the time and that’s will helping your patients achieve the good metabolic control.

Andrew Schorr:

Jane, you must end up on your end there at NORD of course across a lot of conditions with some very grateful people who are just blown away that there is this assistance.

Ms. Keane:

That’s exactly right. I think that we kind of are the last straw, so to speak, the last hope, and they’re always very grateful to hear that we can reach out and help, and all of our staff is very understanding to these situations and are very helpful.

Andrew Schorr:

Great news, and Karl it must make you feel great what you do at BPPS as well.

Mr. Mason:

I think it’s very rewarding. We have a wonderful team at BPPS of about 25 people, and they’re all really working hard and really care about the patients, and I think that’s what drives us each day that we go in, and it’s very rewarding to attend patient meetings or get a phone call from a patient knowing that we’ve helped them in some small way.

Andrew Schorr:

Elaina, so thinking back to all your time in the clinic, how does it work? We talked about the way they should call, but people shouldn’t feel embarrassed about this at all, and they can certainly talk about this with their providers as well, right? I mean it’s not a secret. Work together.

Ms. Jurecki:

I think the bottom line is you work as a team, and that has always been the most successful approach that I’ve been able to encounter when working with various individuals and helping them. The older individuals with PKU who have been off diet for a number of years and working really closely with them to get them back into diet. It’s just like as you mentioned with Greg when he noticed these symptoms of having a high blood Phe over a long period of time. Once they realize it and they’re willing to make that commitment, we all have to work as a team to get over every single hurdle that is going to be confronting them so that they can get their blood Phe down in a more appropriate range and that way they can reach their full potential and what they’re meant to do in their life.

It definitely takes teamwork and having another resource like BPPS and NORD to help these individuals have been wonderful services because again it allows the healthcare providers to focus on the patients and the management of the disease and then seek this assistance from these other agencies that are very experienced with dealing with the insurance companies because I can tell you I surely was not, and it would take me probably three times as long to be able to handle something that I think Karl could probably do in five minutes. So it’s very, very I think helpful for these clinics to know that these types of services are out there to assist the families and the clinics.

Andrew Schorr:

Amen. I want to thank you for what you do Elaina Jurecki now at BioMarin and so many years in the trenches out there at Kaiser Permanente and UCSF. Thank you for what you do. And Karl, you snap your fingers and you do things in five minutes. It makes it sound easy. I know it isn’t, but it’s really a wonderful resource, and Jane same to you. Thank you for what you do too.

Now I want to just mention that Corinna you have two kids with PKU, so it’s all about the Phe and it’s all about living a normal life. What’s your vision for your kids when now things seem to be, it takes work, it takes support, but it seems like Phe is pretty well controlled. Are you going to be dancing at weddings and having grandchildren? What do you think looking in the future and hope?

Corinna:

I have son who wants to be a professional baseball player, and I look forward to watching him achieve that goal. My daughter wants to be a veterinarian and she wants to travel the world, and I can’t wait to see that happen. I believe that with the help of BioMarin and BPPS and NORD I don’t have to worry about the details. I can focus on what’s truly important, and that’s just watching my kids grow. They take that daily stress, that economic stress away from me, and they allow me to watch as my kids reach their full potential, and that way I don’t miss out on what’s truly important in life.

Andrew Schorr:

Okay, well you’ve been with us once before, and we’ll have you on again and monitor their progress. Please wish them all the best from us, and thank you Corinna Vonderwell for being with us on the banks of the Wabash River there in Vincennes, Indiana.

Now our next program is May 19th, and we’re going to discuss how confident can you be with your PKU treatment plan. So please join us for that. Spread the word. We’ll be posting the replay of this program, the transcript, and our whole library at www.patientpower.info/pku, and I’m just happy that we can do this whole series and bring this important information.

I’m Andrew Schorr. I hope that you’re having a beautiful spring wherever you are, and remember knowledge can be the best medicine of all. Good night.

Please remember the opinions expressed on Patient Power are not necessarily the views of BioMarin, our partners, or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.