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  • Writer's pictureSam Balenzano

Goodbye Healthcare?

If you're Canadian with PKU, or even just a Canadian that has consistently large medical bills, you're probably thinking to yourself:


Trust me, I have gotten A LOT of questions about my decision to move to America, so why did my husband and I choose America? There a few reasons but the biggest one being this:

God gave us peace about America and knew if that's where we were supposed to be, He would provide for us.

And let me be clear, not everything seemed to make sense about living in one place or another, but it took a lot of trust in God and one another to choose a place to live.

So now I'm in America, I'm a visitor with no real "status" yet (and just getting married doesn't give you any sort of status), with huge medical needs. Now what?

We applied for my adjustment of status two months after we got married (the first time), which still doesn't give me status but gets the process going! Once you apply for your adjustment of status, you can't leave the country or it will mess with the process. So now I'm stuck, away from my medical supply in a separate country with no job, and my husband isn't able to get benefits for another 4 months from his work. Smooth move Fed-Ex.

Thankfully, my parents made sure I was stocked. Because I haven't fully immigrated, I'm still eligible for medication from Canada, so they would ship me my formula and my kuvan pills.

Once my husband got benefits, I found out I was able to qualify to receive his benefits because I was able to prove we were married (heck yes). That's when the real challenge began.

How do I make the next part not 5 pages long. Let's do bullet points.

Here's what I learned about the American health care system when it comes to PKU:

  1. DO YOUR RESEARCH WHEN IT COMES TO CHOOSING INSURANCE (although its super hard to do this until you actually need to order something, do your best)

  2. Formula is not classified as "prescriptions", its classified and included in your medical expenses

  3. Don't just order things to see how much it costs or you'll end up with a $6,000 bill and no way to pay for it

  4. Formula 4 Success is a great resource to help you figure out what your insurance coverage is

  5. NORD offers patience assistance programs

  6. There's a generic version of Kuvan, and even though you've been on brand name Kuvan for 6 years, your insurance company may still make you switch to generic, and will only switch you back if you try generic and it doesn't work for you

  7. If you live a certain distance from your clinic, they won't be able to help you financially

  8. If you are on any kind of medication through Biomarin, and you qualify for their co-pay cards, they will pick up most, if not all of the costs that your insurance doesn't cover

  9. A lot of the time, people will tell you different things that don't match up, tread lightly

  10. Inquiring with a medication company, sometimes (or always in my case) means you'll get an order from them that you didn't want and now have to pay for

  11. Blood tests to check your amino acids are $600, and clinic visits can be anywhere from $300-$500 (like....what? This is why you need good coverage y'all)

  12. When you think you understand your coverage, you don't

  13. Sometimes, the $6,000 that you owe, gets mysteriously fully covered and you hope no one is pranking you

As you can see, it has been a freakin rollercoaster. And I'm not saying every experience is like this or that the numbers check out the same for everyone, but this was my journey...and the ride is not over.

All I have to say, is if you have PKU and you're moving to the US, or even to another state, do your research. Coverage in America is state governed, rather than federal, so each state has different coverage. Some states fully cover formula and clinic visits, some require insurance to cover at least a portion of these expenses, some states will help you until you reach a certain age and some states don't help at all.

For the state statutes and regulations regarding PKU coverage click here.

I know what you're thinking...Wow. I know. I don't know what I would do if I had a full time job, because dealing with my insurance has taken up all my time. But there are resources, there are people working on making this easier, there is a big community of people all going through the same thing. If you have any specific questions about insurance or even my specific coverage, me. Your biggest weapon and shield is communication with others who are going through the same thing.

We're in this together.

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1 comentario

01 feb 2022

Hi there, I am the parent of a PKU er who is working in the US. I believe we cannot ship formula or kuvan to the US because it is a drug regulated by the FDA, and it’s against their rules. How are you getting around this? I have been taking formula and kuvan to my son myself. He’s currently working in Portugal, and I plan on doing the same thing.

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