The cost of an incurable disease…

Living On Oxygen for Life

Perhaps you remember back in March of this year, I mentioned that I tried a new medication called Tyvaso for the Pulmonary Hypertension that I have. Pulmonary Hypertension has no cure and it is a rare disease involving the increased pressures within the Pulmonary artery leading from the heart into the lungs. It’s often misdiagnosed as some other disease and once people get the correct diagnosis the chances of survival with Pulmonary Hypertension without medication/treatment is around 2 to 3 years. I have been very lucky. I’ve been living with Secondary Pulmonary Hypertension for my whole life.

Now that I’m older and my body is beginning to wear down, my Pulmonary Hypertension has gotten to the level of… well, it’s pretty darn bad. I currently take Tracleer. It’s the best medicine that my body can actually tolerate. But I did try for 1 week the medication called Tyvaso. I was a little nervous because I knew it was going to be expensive and I wasn’t sure how much the insurance was going to cover. Last week, I finally got my insurance company Explanation of Benefits letter for the Tyvaso trial run. Here is what I received…

What you see in this picture is the actual cost that is billed to use Tyvaso. It comes as a whole kit that you receive in the mail which includes two battery powered nebulizers and so much stuff that goes with it. The big amount is the cost of the actual Tyvaso medication for a 28-day supply. With my insurance, this medication is not billed as a prescription, like at a pharmacy or mail-order prescription company.


This picture shows the total amount that could be charged to me if my secondary insurance doesn’t pay for any of this. Which would suck… But do not fear if you are about to go on the medicine. There is help through the Pharmaceutical Company that makes Tyvaso. They offer Patient Assistance. Do not be ashamed to apply for assistance. As you can see from the above pictures, the medicine is very, very expensive and what you see is the cost of one month. And this medicine does work for some people.

If your income is too high for the Tyvaso Assistance program, there is another place you can apply for assistance. It’s called Caring Voice Coalition. Take a look at them and see what all they could do for you.

Remember that November is Pulmonary Hypertension Awareness Month…. so spread the news that Pulmonary Hypertension needs a cure!! As always, you can reach me at and please FOLLOW my blog so that you will know each time I post to my blog. Have a great day and breathe easy!


December 9, 2013: I found my notes that I wrote for myself concerning how much will my insurance will pay and how it’s billed to my insurance. According to what I was told prior to taking Tyvaso, Tyvaso is billed on my insurance as a MEDICAL TREATMENT…not a prescription for medication to be filled by a pharmacy. It is a specialty drug though. That means, for me, it is 80% covered and then my secondary insurance will hopefully pick up 20% of whatever is left. What’s left after that is what I’m responsible for paying. I haven’t heard yet how much that will be.


5 thoughts on “The cost of an incurable disease…

  1. I too am on Tracleer and it cost $7,200.00 a bottle, every month. Thank heavens all I pay is a $10.00 copay. It’s unbelievable how much medication costs, and I often suspect that there may never be a cure as the pharmaceutical companies stand to lose a hell of a lot of income!

  2. It looks like another example of “Big Pharma Greed” to me. This is as much as a car cost. There is no way a few chemicals cost this much money. I know what they always say…”we have to pay for research”. Yeah…right. It’s like the 100.00 dollar Asprin when you are in the hospital. It’s all greed.

  3. If you could find out the formula for the medicine. For 29,000 dollars a month, you could set up your own lab at home and make it yourself after a few months. And I’m not just kidding. Just a thought.

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