Wednesday, November 14, 2012

Doubtfully Optimistic for a cure

In a previous blog I spoke of CF Advances and my thoughts on it. In that post I stated that I didn't believe there would be a cure found in my lifetime. I still believe this and stated I would explain at another time, I think I'm ready to try and explain.

I want to go into this blog by stating that I completely believe and have faith in the CF Foundation and they do everything in their power for CF patients, new meds and striving for a cure. There is very much evidence to prove this statement, if you do some research you will find that the CF foundation does exactly what they say they do, and the money that is raised through and given to them absolutely goes to new research. I am not a pessimistic person. I am positive almost all the time and am highly annoyed by negative people, whiners, and complainers in general. I am also a realist. I always have faith and give a great deal of my troubles to God. But I also believe in the facts in society.

Disease is big business. Pharmaceutical companies make A LOT of money from drugs to treat disease. Let me give you an example.

Vertex executives said Kalydeco would cost $294,000 for a year's supply, placing it among the most expensive prescription drugs sold in the U.S. Specialty drugmakers are known to charge $300,000 or more for drugs that treat very small groups of patients.
"The drug is priced for the value it will deliver to this very small group of patients," Vertex Executive Vice President Nancy Wysenski told analysts.
Wysenski said Vertex would provide the medicine for free to people with no insurance and household income of $150,000 or less. The company will also cover 30 percent of copay costs for select patients who have insurance.

$294,000 a year, $24,500 a month, $6,125 a week, and $875 a day. Of course as stated they will help families without insurance, and with co-pays. But lets do some math, math was always my weakest subject so forgive me if I am wrong. Kalydeco helps about 5% of the CF population approximately 1,500 persons. 1,500X $294,000=$441,000,000. The reason the drug is so expensive? It only helps a very small group of people, meaning less is being manufactured which cost more. Which ever way you cut it that is a very large amount of money. The CF foundation works in collaboration with Vertex Pharmaceuticals and other companies to do the research and production of these drugs. They do this to expand greatly on the resources pharmaceutical companies have to labs and chemical compounds, improving there chance of getting these drugs developed. Vertex and other companies also invest in the drug research, giving them profitability. Now honestly I have no idea how much money they make from Kalydeco, and I find it somewhat comforting that they invest back into the CF Foundation. The CF foundation also funds programs for patient support and care.

This is only one example of a drug, a ground breaking drug in the CF community. But If you think of all the other diseases and drugs the treat them, there is a lot of money to be made. That is why I don't think there will be cure for CF or a lot of other diseases. What I do believe is at some point there may be a daily drug that will significantly slow or stop CF. That is like a cure, yes, but a cure to me would be something as simple a vaccine, or a simple procedure to fix the defect. Would I be happy with having to take a pill daily and stay healthy forever ABSOLUTELY! Like many do for many diseases. The bottom line to me is it's a business. The CF community always stays at about 30,000 because people are always dying and always being diagnosed. We are never ending money maker for these companies. I don't think they do this out of malice, and I believe their is many in the business to cure disease. There's just a lot of bureaucracy that goes along with it. Someone once told me "We can put a man on the moon, but we can't cure CF?!"

I really hope this doesn't come off as me being pessimistic or from a place of anger. I am not angry about it or nor do I dwell on it, it's just my honest opinion. I will continue to raise awareness and money for the Cystic Fibrosis Foundation and donate to other great causes working towards treatments for Cancer, Huntington's Disease, and many more. I will take as many drugs a day it takes to save/extend my life and raising and giving money to CF Foundation will lead to those drugs. Because although we may never have answers to these diseases there is always medical advances, and that is the next best thing.

Please visit and look through some of the info they have, you can read all their reports and view the drug pipeline showing which drugs are where in trials.


  1. I agree with some of your points here, but I also think that as far as "money making diseases" go, CF is relatively low on the list. From what I understand, many people involved in research and affiliated with the CF Foundation have a direct connection to someone with CF. It seems to be a more personal battle for many people involved which makes me think that they REALLY are trying to help everyone. Does that make sense? Anyway, great post! Thanks for sharing your thoughts even though you knew not everyone would agree. I think you are simply amazing!!

  2. Thanks Jenny! I agree we are small on that list and a very personal based community.

    I just finished your blog and wow your pretty amazing yourself! Ihave to say I love that in your ER picture your still wearing your earrings! I never leave the house without mine! lol

  3. Jamie,
    You are so brave and so wise. It's amazing to me that you can know what you know and still be optimistic. YOu did a very good job of explaining this from your perspective and opinion. These are hard facts to share. I used to campaign for the American Cancer Society via Relay's for Life. Team Captain for 3 years. But when I started doing research I discoverd they didn't really seem to be interested in a cure or prevention... just treatment. And why would they be? Once a cure is found, ACS shuts down! It all made sense in the same way you described it. Maybe that is why you tagged me on FB for this post? I must have already told you that? Anyways.... I think things are changing. Greed and fear is being replaced with love and compassion. I believe we are all one and as we get closer to remebering that people will choose something that benefits the whole before choosing something that benefits the self. Hugs, love you!!!