Now Onto Reality

Hello, again!!

Well, this past month has been an interesting one. As you all know, or should know from my previous posts, I did the 30 day Kuvan trial. I never thought it would entail so many things. I had to be very careful in every aspect of my life, which is not uncommon considering I have PKU.

It started on February 7th. I had to take a blood test and then write down everything I consumed for the day. Then at supper time I took the medication. The first dose was very hard to take because I wasn't expecting it to be so acidic and I got heartburn as soon as I swallowed it. The second day, I had to repeat day one, including the blood test. It was the same story for the third day. After that, they (being my dietitian in Portland, OR and the dietitian from Biomarin in San Francisco, CA) wanted me to cut back to only doing blood tests on Sundays, which I think anyone would be happy about.

I started on only 12 grams of natural protein daily, with 30 gram of medical protein. Well as soon as they figured out that Kuvan does work for me, they started putting together a "Booster Plan." This was to build up my natural protein intake steadily to see how much my body could handle with Kuvan. So far I have not heard back about any of these levels. But there plan was interesting.

On the first day of the "Booster Plan" I was to add Nonfat Dry Milk and chocolate milk to medical beverage. This mixture was surprisingly very tasty. In the next few days, that was not the case as they were adding more of each. A few days later we started adding one egg a day. I got up to adding 20 grams of natural protein to my existing 12g. Like I said, I haven't gotten any test results back from the time of my Booster Plan. But I am very hopeful for acceptable levels.

After my 30 day trail was over, it was then up to my insurance to decide what they were going to cover. Biomarin had a representative working with my insurance during the trial just in case it were to work for me. Well as you may know, I am prescribed eighteen pills a day, which equals 558 pills each month. Unfortunately, my insurance will only pay for just under 400 pills a month. That leaves a large expense to me, being that the pills are $37 each. I, also, have a 20% copay. That means my part, if my math is correct, is just over $9,000 per month.

That is a large bill for a single prescription for even the wealthiest family. There is, however, a foundation called NORD (National Organization of Rare Disorders), that I was unaware of until recently. They help those with rare disorders pay for medications that they cannot afford, like me! They do have certain requirements as far as financial caps. They determine the amount of help, if any, by your family size and your annual income. The basic standard is below national poverty level. I had no idea what the poverty level was until I applied for this assistance program. Apparently, my family income is in the poverty range. I thought we were doing well for our age and area. But I can't complain because I do qualify for the assistance. I am very thankful for that.

If you have any questions concerning NORD or would like more information please visit their website at  http://www.rarediseases.org/.

Also, if you have any question or comments for me you can visit my facebook page ( the link is below). You can also send me a message if you want it to be more private.

Until Next Time,
Phe

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